Setting Things Straight (a.k.a. Why I am supporting TWLOHA)

Even though I have fibromyalgia, IBS and Chronic fatigue, I do my best to keep up the one thing that I’ve been passionate about for years, which is running.  I don’t run very fast anymore, nor very far, but I do my best to get in at least a 5k run once a week.  And to celebrate, I frequently post about those runs on facebook.

These runs are not easy by any stretch of the imagination.  I get the normal challenges when running and on top of that I have pain that runs up and down my body while I’m running for no reason at all. That makes it really tough at times to keep moving.  And on top of that, overdo it by just one quarter mile and a fibromyalgia flare up could stop you from doing anything for days afterword; including the the all-important getting to work.

So I run, and I celebrate my accomplishments when I can (like pictures on the aforementioned facebook) and I also talk about my lows too.  After all, you can’t know how good your high points are without some low points thrown in occasionally.  But I didn’t think that posting about those type of things made me an inspiration.

However a couple weeks ago, a friend of mine messaged me to tell me that I was an inspiration for her.  She said that she follows my up and down running posts, and that I inspired her to do a virtual run herself.  This very wonderful lady has her own issues to deal with.  She recently had knee surgery, and on top of that she is an abuse survivor.  Her abuse was so bad that she’s spent years trying to get herself back on track. So for her to say I am an inspiration was something that was very moving for me.

I felt so honored to be an inspiration for her that I chose to also sign up for this virtual run and run it on the same day as her in solidarity.  I want to celebrate her strength and endurance. Then she told me what virtual run she decided to choose, and that made me realize there was more to this than simply inspiration.

This fine lady is doing a virtual run that supports an organization called “To Write Love On Her Arms” (TWLOHA).  TWLOHA is an organization that works to prevent and heal people from addiction and help prevent suicide.  I’ve read about this organization and it’s founding years ago, and was very impressed.  It is a Christian organization, but the founders are the Christian-type that have good intentions.  They don’t judge, nor do they try to recruit.  They are simply trying to help their fellow human being.  These are the types of Christians whose messages out to the public are downright whispers compared to the Evangelical Christians that scream from every street corner how bad people are.  And because the Evangelicals are so loud, the Christians who run TWLOHA end up getting grouped in with them, which is unfortunate.

So I signed up for this run, even though the subject matter made me uncomfortable. I’m uncomfortable about it because by choosing to sign up for this run, I’ve brought up pieces of my own life that I haven’t thought about in almost 20 years.  And now that it’s come up again, I’m realizing I have to get some things out in the open.

You see, the only reason that I’m still around is because about 20 years ago, I didn’t swallow enough pills to actually do the job.

Back then, when I felt like there really was nothing any good in this life for me anymore, I downed a bottle of muscle relaxers, a bottle of prescription pain meds and a couple of other prescriptions my roommate at the time had. I didn’t have my stomach pumped, never went to the emergency room, and of course I got no hospitalization nor care with a counselor or a doctor.  But even though I had taken several bottles of pills, somehow I woke up the next morning.  My stomach had felt like it had been ripped apart and it did for weeks afterward, but I was still alive.  To this day I don’t understand how.

I know now that back then I was suffering from major depression, PTSD from a rape that happened a couple months prior and had been dealing with a bunch of other things going on. I also realize now that the major depression was something that I’ve had for a very long time, most likely since I was a child.

There is a reason this is coming out now.  There is a reason why I’m reminded of this organization.  The fact is for the first time in many years I am struggling again, and have been for almost a month.  This run, it’s uncomfortable topic and the organization being helped by it made me realize that this time my struggle is a bit more serious than it has been in the recent past. Maybe not as serious as it was 20 years ago, but serious nonetheless.  And I need to treat this for what it is; a struggle against a deep depression that could turn into another major depressive episode should I not start implementing self care and figure out how the hell to get out of it properly.

I need to also remember – It’s not my fault that I can dive into a deep depression – I’m prone to it.  It’s also not my fault I have fibromyalgia.  And I have to acknowledge that fibromyalgia sufferers have higher rates of suicide and adjust my own self care accordingly.  I also have to recognize that fibromyalgia sufferers have many facets of the disease that only a small number of other disorders have to deal with.  Not only do we deal with the pain, we also have to deal with the lack of understanding by doctors, (some don’t even acknowledge it’s a disease in the first place) so-called friends (everyone has pain, yours is no different than mine, in fact mine is probably worse than yours is) and even family (if you just lost weight, or exercised more I’m sure you would have less pain).

On top of all that, the past month has been a very trying time for me.  I realized that I had more so-called friends in some circles than I did true friends, so for the sake of my self worth and self esteem, I’ve cut those people out of my life.  But doing so also cut out activities that gave me what I thought was a sense of purpose and enjoyment.  Now I realize that much of that purpose and enjoyment was my perception alone.  Much of the circle of friends in actuality did nothing for my well being nor the creation of any lasting friendships. On top of that, very little of the activity associated with the circle did anything to benefit my self esteem or self worth.  Instead, there were many times it was lowered.  So overall it was good that I did the cut, but I still grieve for the things that I thought I had.  And the fallout of this decision isn’t completely over yet either.

So why now?  Why put this all out in the open?  Because I need to.  I need to recognize the seriousness of the situation now as well as acknowledge what happened in the past. Because hopefully someone else might read this and also realize that there are sicknesses out there that don’t have anything to do with a diagnosis by a blood test, or are not sicknesses that are specific and measurable in any way.  Perhaps they will realize that mental health diseases ARE in fact actual sicknesses, and that they perhaps are prone to them as well. Perhaps they may just realize they need help.  Or, maybe they had never heard of TWLOHA and might stop over to their page to see what it’s all about and toss them a contribution or two for the good work that they do.

This is also another reminder to me of how we are in the care of the Gods, Goddesses and other spirits.  While some may call it coincidence that this friend contacted me with this particular run for this particular group, it means more than that to me. Because while I do believe we have free will, we also have those that look out for us. And those that look out for us and our wellbeing could either be on this planet with us or in other planes of existence and visit us from time to time.

No matter whether it is coincidence or fate, these are the reasons I needed to come out with this post.  I needed to acknowledge my past. I need to acknowledge where I am at now, and I need to recognize that I can easily fall into a situation that I need help to get out of. Now perhaps I can move forward a little easier.

And come April 14, I will be able to run for an organization that helps people who are so sick that they don’t even recognize how sick they are until they get better.

For more information on TWHOLA, you can go to their website.

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Learning to Love the Body Authentic

When I was first starting to blog a couple years ago, I read a post from another Lokean Blogger about a meditation/journey she had.  She remarked about how every time she transformed her form in the journey, Loki had pushed her back into the same exact form that she had in life.  She talked about being extremely mad at him for doing so, because she hated her figure so much.  But Loki insisted, saying he wanted her as comfortable with her body in the physical form as she was with her mental form and abilities of shape changing.

When I read that, I remembered thinking, ‘yep, I’m going to have to do that someday too.’  Well, that day has come. But learning to love my form is happening in a much different way than what this blogger had to go through.  For me, there are additional facets of this that I must face.

As most who read this know, I have Fibromyalgia.  When I was first diagnosed, I thought I could handle the disease by simply decreasing the quantity of my activity, and taking longer rest periods.

Boy was I wrong!

It’s a lot more complicated than that.  Sometimes you can  push yourself, but more often doing activities becomes dependent on variables that must be considered before you do an activity.  Further, the more you push to do something, the more you can make the disease worse. That means the little bit of extra work you did in a martial arts class might mean you have permanently shortened the amount of energy you have every day for the rest of your life.

So my being comfortable with my body doesn’t just include the body issues (which also thanks to the fibro are on the forefront again).  It also includes becoming comfortable with what I can and cannot do.  I need to learn how to listen to my body more deeply than I ever have before to better understand what I can do, when I can push to do more and when I need to take time to rest more deeply.

It doesn’t stop there.  Fibromyalgia also messes with digestion and exacerbates other conditions.  This now means what is going into my body is just as important as what I do.  Eat the wrong thing, and the balance of the whole system can take weeks and even months to recover.

So in short, instead of just being comfortable with my body, I now must also be mindful of my movement, my eating, my rest and how I think and feel in order to deal with this disease properly and make the most out of what activities I can do.

I am not writing this to whine.  This is a challenge.  It’s one of the hardest challenges I’ve ever had to take on in my life.  I also know I don’t need to accept this challenge if I don’t want to.  I could simply go with what I can do at any given moment.  But if I want to lead a life that is the most authentic to my spirit, my morals and my beliefs, and if I want to become the best person I can or pursue any activity that needs any sort of training, and to fulfill my obligations, it is work I must do.  This to me, is what my Gods would want me to do.

 

So, what does being authentic to my body mean to me?

  • It means bowing out of my last martial arts class, for now.   But that doesn’t mean I can’t continue to read up on the arts I have trained on and practice the techniques when my body allows me to.  Sure, I won’t be in a sparring ring as an opponent anytime soon; but perhaps with patience I can be there as a referee.  Or at the very least, I can support my husband and help him with forms and technique as he prepares for his own black belt boards in late summer.
  • Running slower, or doing a running/walking practice instead of straight running needs to be considered if I ever want to race again.  I could still complete races, but it may be much more walking than running depending on how my body feels that day, and I must be OK with that and not push anyway.
  • My sword practice needs to be equal amounts of reading about fencing and drills I can do alone; and I must not get upset about missing opportunities to cross blades with my sword brothers and sisters.  I have already beat myself up enough for the significant number of practices I’ve missed.   Even though historical fencing is lower impact than my other martial arts studies, it still takes a significant amount of energy to engage an opponent. I need to remember that.
  • I need to reconsider a personal eating plan.  Foods I once had no issue eating now bring stomach pain and days of being uncomfortable, which then eats into the stamina of the day.  My beloved two cups of coffee in the morning are in jeopardy as I find I am still having discomfort from drinking it even after switching to a lactose free creamer, and then to a non-dairy creamer.  Carb-laden foods like the gluten free pizza my husband and I both love are now on the chopping block once again, along with the infrequent serving of bacon we occasionally have with a weekend breakfast.  And as a caveat to this; I cannot just depend on a diet someone else puts together for me: Diets like Paleo, or FODMAP are good starting points, but they are not one size fits all with conditions like I have.
  • Finally, I need to become comfortable with my figure.  I have a ‘lovely’ area around my stomach that reacts like a natural ‘muffin top’. (when you wear tighter jeans and your skin pops over the top of your jeans like the top of a muffin – that’s a muffin top.  By the way, whomever decided to name a flap of skin after a calorie-laden baked good needs a right and proper curse.) It doesn’t matter if I am wearing tight pants or not; my body has made this natural hideousness on its own; and instead of pushing myself to lose weight and attempt to hide that area with slimmers and tops that flare out; I need to be comfortable with it.  This is the part that I think is going to be the hardest.

 

This sounds like a lot, doesn’t it?  It does, until you realize what routine I kept prior to the onset of the fibromyalgia:

  • Two hours of Tae Kwon Do classes a week plus an hour of Hap Ki Do classes per week
  • 1.5 to two hours of yoga per week
  • Running twice a week, with one run being a distance run of 5 miles or more
  • Swimming a half mile to a mile a week
  • Weekday lunch walks done as fast as possible with a minimum of 2 miles completed each walk
  • Eating the bare minimum of calories I could (usually 1500-1800) to continue to lose as much fat as possible (Yep!  Way too little for the activity levels, I know.)

 

Perhaps I should be thankful for the Fibromyalgia in some ways.  It made me realize what I was doing to my body was torture and not healthy.  Sure, I was getting down in size.  But I realize now it wasn’t worth the panic over the calorie or not being able to get a workout in because of sickness.  And it absolutely wasn’t worth the fear that I had every morning of my pants not fitting well because of bloating or because I had gained weight.

It’s amazing what we put ourselves through for reasons like health, pushing through obstacles or to become better at something.  Sometimes in the effort we become taskmasters and beat ourselves down more than anyone else ever could.

And that is why being authentic is so important to me now.  Loki was right about the other blogger needing to be comfortable in her own form, and he’s right about me needing not only to be comfortable, but being able to understand and know my body now more than ever before.  This isn’t work that is going to happen overnight.  And it will probably take many months of understanding and then months trial and error to move my activity levels forward.

But like with any other task, it’s not going to get any easier or take less time until you get started.

Sometimes

Sometimes you hurt so much you cry
But that is the least of what it can do
Instead you push on, through the daily lie
Until you yourself don’t know if it’s true

Sometimes you are so tired you could scream
Simple tasks become unachievable feats
No longer can you do what you dream
A couch and bed now your only domain

Sometimes you get mad enough to push through
Pick up the sword, it’s time to go fight
Overcome the challenge, and create ones anew
Don’t expect anything to be easy

Sometimes you don’t dare speak the truth
Pain?  So what??  I have my own!
You are no different, we are all robbed of youth
You can’t prove you are any worse off

Sometimes I wish for better care
That one magic pill that would set me free
Instead, oil salesmen sell their wares
Sure!  I can help!  For a huge fee

Sometimes I hope and dare to do more
A full-time job, exercise and activity
Fake it till you make it, just one more chore
Push through till it hurts just to breathe

Sometimes I dream for more activity
Close friends, girls nights out, parties and shopping
Instead I get shut down aggressively
How dare you make plans in your condition??

Sometimes I still dare for more
Sometimes I’ll keep trying
Sometimes I get it
Sometimes

Spirituality and Chronic Illness

 

It was a very cold day in January when it happened.  I was sitting at my desk at work, trying to warm up from walking between buildings on my company’s campus when the full onset kicked in.  At first, I simply felt tingling on my arms, but within a matter of moments it felt like I had just been hit by a car.  Pain overtook every inch of my skin and started working its way down deeper into my body.  Every bone ached.  Every joint stiffened up.  The once comfortable office chair now felt like I was sitting on a bunch of spikes.  My clothes felt like sandpaper.

I was experiencing my first full fibromyalgia flare up.

Fibromyalgia is a disease where the sufferer experiences chronic pain.  The pain can be excruciating at times, like I found out on that cold January morning.  But it can also be intermittent.  It is a very rare day when a fibromyalgia sufferer doesn’t feel some sort of chronic pain.  And many of them also suffer from other chronic illnesses, like chronic fatigue, irritable bowel syndrome, colitis and numerous other issues.

Millions of people suffer from chronic illnesses like I do.  And like me, I am absolutely certain that many tears have been shed over the years about why this is happening to them, why no one understands their pain, and worst of all, why no one can diagnose or properly treat them.

Since that January morning, I have learned a lot about why this has happened to me, and what I could do to help myself feel better.  I am thankful for the resources out there and for the people I have reached out to for more information.  But I still believe that there is one facet of support that is sorely lacking for indiciduals with chronic illnesses, and that is spiritual support.  I don’t think it’s for lack of trying, there are plenty of spiritual leaders out there that are willing to do what they can to soothe the suffering of those dealing with issues like mine.  However, they will never fully understand the pain.  They will never fully understand the fatigue, the mental stress and the hundreds of other symptoms that people with chronic illness have to fight every day.

For those of us following pagan or alternative spiritual paths, there is even less information out there.  And the information and tools that are out there don’t really help.  In fact, many of those tools can cause more pain and suffering.

For example, there are times that even the the simplest energy work hurts.   These are times when even the well wishes of others double the pain you feel.  You know they mean well, but the healing energy they send feels like a sandstorm against and inside your body.  They don’t understand that those of us with these types of illnesses have enough energy from nerves going haywire as it is.  To send additional energy at that time is like adding fuel to the blazing fire that is a flare up.

Another example is the total body wellness model in spirituality.  Many books, health gurus and even doctors talk about how an illness starts as negative energy in your aura.  Left alone, this negativity goes deep into your chakras and causes disease (usually spelled out as ‘dis-ease’).  While this view has some merit, most people with chronic illness will go through a period where they start to blame themselves for getting sick.   This couldn’t be further from the truth.  However, when you are in the middle of a flare up of fatigue or pain, you can’t think straight.  That’s when the thought that you have done this to yourself grows to the point that your self worth diminishes, you start to take care of yourself less and less, and the disease gets worse.  This horrible cycle continues until you can either find the courage to stop it or until the disease gets so out of control you end up disabled and bedridden.

I highly doubt I am the only pagan living with diseases like fibromyalgia.  And I also don’t think that I am alone in using energy work, spells, meditation and journeying to help fight this disease.  These things are just more tools in the arsenal, and if you are like me, you want as many tools as you can get.

In the coming weeks I want to explore this topic further.  I have been using energy work on myself to alleviate the symptoms of my own chronic illness, and I believe that these tools can be used by others for the same benefit.  And while I believe these tools won’t fully heal these illnesses, they can make life better for many people.

I will be putting out posts about this as often as I can.  First however, I must put how I am doing some of these things into words to the point that they are understandable.  When I first got the idea for this series of blog posts I must admit that so many ideas and thoughts were coming to me that it was hard to write everything down.  I truly hope that these ideas will help to make others lives better.  And even if it just helps one other person, I will be very happy.

For now, if you are fighting what feels like a loosing battle with any chronic illness, please remember that you are not alone.  Recognize the fact that you are a powerful and strong person that deals with more on a daily basis than many people will ever realize.  That fact means you are stronger than you give yourself credit for.  We are in this together, and we can see this fight through.

Photo from Deviant Art