Keeping the faith with chronic pain

When diagnosed with a chronic illness a piece of you begins to shrivel and die. How could this be, why is this happening to me? Our faith in ourselves and our gods are shaken to the core. We can find ourselves spirally into depression and anxiety. We can't breathe. Anger is an easy emotion to turn to. Why has the Goddess turned Her back on me? What have I done to deserve this kind of karmic backlash?

You struggle to find the right doctors and specialists, the right treatment program, educating yourself, friends and family; not to mention the fight for benefits and whether you'll be able to continue to work. This alone could drive the strongest and healthiest of individuals into depression and absolute frustration. You need to have an advocate to turn to, to put your faith in. That's when we turn to our alter, light a candle, and ask the impossible question; why me?

If living in my pagan path has taught me nothing else, it is that we are given these challenges because we are strong enough. And there is a valuable lesson to be gleaned from it all. I can say with absolute certainty, from my own personal experience, that we don't feel strong enough in the beginning. Anything but. It takes time. For many, we have to grieve and mourn the lose of our former selves. Ritual and meditation is a wonderful place to start.

Meditate on who you saw yourself before - then on who you are in the present moment. Mentally light the fire on the pyre of your dead self, send her/him to the Lady. Then right down everything that has and will be changing in your life. How it makes you feel. What you plan to do about them. What you'd like to do about them. Cry. Scream at this paper; this symbol of what was. Then burn it. Watch it as the paper curls and blackens, flaking off to be carried away on a breeze. Watch the smoke rise steadily upwards to the gods. They hear you. They see you. Now take three long, cleansing breaths and just let yourself feel your body for a moment. It's much more difficult than you first think it is.

Sit with your pain. Feel it. And slowly, with time you can begin to accept it. This ritual can be done multiple times and for multiple reasons. Keep doing it as often as you need, but make a point to practice your deep breathing and let your self sit and feel your pain on a regular basis. Light candles and incense, cast your circle, invite the quarters, God/Goddess, and any other positive energies you wish. This takes time and can be painful in the beginning. Let the God/Goddess be with you during this time. Feel their energy holding you up and supporting you during this process. You would not have been given this challenge if you were not strong enough for it.

Buddhists call it Radical Acceptance. Well, I'll tell you that the first time my therapist suggested this to me, I thought maybe she was the one who had lost her mind. Maybe we should switch places and have a little chat about this. But, the more she explained it, the more sense it finally started to make for me. This "sitting with your pain and accepting it", has nothing to do with giving up. You feel your pain, and you accept that in this moment in time, this is simply how it is. Nothing more, nothing less. You accept that your doctors have diagnosed you, you are working on a treatment plan which you will follow through implicitly, and that you will continue to look, to research, to speak to your doctors about your health on a more regular basis. As aptly put by Tara Brach in her article, The Power of Radical Acceptance: Healing Trauma though the Integration of Buddhist Meditation and Psychotherapy, "which means clearly recognizing what we are feeling in the present moment and regarding that experience with compassion. I see over and over that Radical Acceptance is the gateway to healing wounds and spiritual transformation. When we can meet our experience with Radical Acceptance, we discover the wholeness, wisdom and love that are our deepest nature."

My diagnosis was a blessing of sorts. I cannot say that I'm completely accepting of my current life, because I struggle with these concepts every day, but with this health challenge I have been able to spend more time on myself and my health. I'm there for my son in ways that I couldn't be while I was working full time. Don't get me wrong, I loved my career, but this has changed my priorities. Made me take a long, hard look at what I really want to do. Writing, art, photography; these are the things I've been wanting to do but have always pushed them aside because I never made time for them. Now may be the time to stop pushing them away and embrace them as I work towards my own radical acceptance. Discover my wholeness, regard myself with love and compassion. Allow myself the opportunity to fully embrace my gods and what they have to teach me. There is a lesson to be learned within chronic illness, and each of us have been given the opportunity to find it, embrace it, and find a deeper connection with our chosen gods. I wish all of  you the brightest of blessings in your journey with chronic illness.

Caleen Martin


Radical Acceptance Article Refrences
http://www.tarabrach.com/articles/trauma.html
http://www.psychologytoday.com/blog/real-healing/201101/radical-acceptance

Live in the now...plan for the...

I read an article today that really made me think about the differences I've gone through from an healthy person, to one with sickness (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/). I took so much for granted before I was diagnosed with FM. We all do. Every task has so many steps that we don't even think about. We need to decide each day; will I clean or will I eat, if I have to drive my son to school, what do I have to give up? We do what is of upmost importance, and the rest just has to wait until another day. And the article is right, when we spend time with friend or family, you're given a gift because we chose you as one of our utmost important things that day. We gave you a piece of ourselves just to be around you. That means a lot for us.

Pre-FM I thought a lot about the future; my future career, car, home, family, relationships, etc., etc., etc. But now - I look around my home and all I see is so much unnecessary stuff. Just things that are absolutely meaningless. I want uncomplicated and simple; it makes my day's easier that way. And now, I think more of the now then I do the future. Don't get me wrong, I do make financial plans regarding the future because that's just smart planning, but my life is now in the present. I can't live in the "what will be". I can only live in the now, because I don't know what my tomorrow will be.

Will I be able to walk? Will I be able to see? Will my pain leave me bed ridden? Could I end up with additional medical conditions that will complicate everything I'm already going through? The answer to all of these questions is most likely yes. I don't know how much longer I'll have to be able to get up and take care of my son, I don't know if my eyes are going to continue to blur to the point that I can no longer see. I don't know if my pain levels will continue to increase as they have been over the past few weeks. None of these are good signs, so I need to be especially grateful for each and every little thing I have in the now. Not in the future...just right this second. Because I have no idea if this is the last second I may have.

I'm not trying to be pessimistic or scare my family and friends, I'm just being realistic. I have a condition that in most will continue to progress and gets worse over time. So in order to prepare for the future, I need to live, NOW.

It bothers me when old friends say they will keep in touch and don't. Say they will call and don't. I miss them, but I don't have the energy to go to them. I can't give my half to a relationship any more...and that really bothers me. I don't know what to do about it.

I'm not saying that planning for the future is pointless, because it really isn't. I guess what I'm saying is that the next time you think about all the great things you'll do/see/be in the future...step back and think about all the great things you do, you see, and you are, right now. Because in the end, that is what really counts.

Communication and Chronic Pain

 

 

At its most basic explanation, chronic pain comes from stress. Stress on our minds, psychological and stress on our bodies, neurological. Combined, we can have excruciating chronic pain throughout our bodies. Many individuals who suffer from chronic pain or other debilitating chronic illnesses are lucky to have family, friends or a partner who understands their medical condition and the physical aspects of the illness; but how many really understand the importance of the psychological aspect? For that matter, how many sufferers of these varied illnesses understand just how much psychological stress impacts their daily health? We've all probably been told that stress can affect our health when we think about stroke and heart attack. But have any of the many, many doctors out there treating chronic pain sufferers included "communication education" on the prescription pad or as part of their physical therapy must do's?

 

Does your family or partner, friends or co-workers make ignorant and many times cruel remarks out of frustration? Do you burst into tears or say cruel things right back at them? My pre-fibro career was in communications, I like to think I can be reasonable. Not so much. Especially with the ever present mood swings that like to sneak up on me like a nasty little ninja, pouncing when I least expect it. My husband studies psychology, he should know better...right? It's so much easier to dole out the advice than take it. And I mean for both of us. I can't blame all communication road blocks on others, no matter how wrong I think they're being. I need to also take responsibility for my own words and reactions.

 

I believe this is true for all of us who find ourselves in these situations. How many of us have had a particularly nasty, stressful argument and within a day have an intense flare up leaving you in agony? Probably too many of us. Communication will make or break each and every relationship we have throughout our lives. So why aren't we taking it more seriously? My doctors have never mentioned anything on communication skills. I see hundreds of comments from sufferers trying to figure out how to deal with family and partners who are emotionally indifferent or at times abusive towards them. Suggestions include having them read comments on the various online support groups, leaving fibro pamphlets laying around the house, have them talk to your doctor at your next appointment; nothing in there about taking a communications course.

 

We, the sufferers of chronic pain, should be first in line for this. Not because we must be recluses who have no idea how to talk to other human beings, but this is difficult. Trying to express our feelings and needs, educate those we care about on our illness, and how to stay calm when we realize our loved ones are talking out of frustration rather than any true desire to hurt us. This is hard work and we can use all the help we can get. That is exactly why these kinds of courses exist, to help us all do a better job of communicating so we can keep the relationships we want in one piece, and be confident in letting go of those we don't need in our lives. They're as much about self-esteem and self-confidence as they are communication, and sometimes having the information come from an unbiased third party makes it more acceptable. I know I'm going to be going back through the ones I've taken in the past; of course, I'm blaming my fibro induced memory loss for the fact that I haven't exactly been using these techniques with my husband. That's my story, and I'm sticking with it.

 

Can you imagine what it would be like to have open, clear and relaxed communication with your loved ones? To have a clear system for acknowledging each others needs. How many flare ups would never have happened if this was how it was from the start? How much easier would it be to handle the daily pain without having to worry about fighting and arguing with your partner or kids? Not that there will never be a disagreement, but there are healthy ways of working through them, and then there's the way we've been doing it. And in the illustrious words of Dr. Phil, "How's that workin for ya?" On the flip side, how much will it mean to your partner, kids, loved ones, friends, co-workers? It could literally be the difference of being a victim of chronic illness, or a survivor of chronic illness.

 

It doesn't have to cost a fortune, although the information is priceless. College's certainly offer shortened and full semester courses if you want to go that route, but your therapist might have a number of good options for you as well. I was introduced to these courses through my career. One to two day workshops in communications that can be used in any atmosphere and relationship. A number of them are even on DVD so you and your partner can listen to them together at home, stop them, talk about it, and keep working through it. The DVD's also make it easy to go back and relearn what our medical memory loss has whipped out of our foggy brains.

 

So, everyone close your eyes and picture yourself at home, your loved one(s) around you. But rather than the typical tension in the air, tears or angry looks see everyone with peaceful faces, calm voices, and peace. Take a few deep breaths while imagining this new home, see it as if it is already like that. Feel how you'll really feel. Now take one last deep breath, open your eyes, and take the first step to making that vision your reality. But until then, take a note from above: before you speak, is it true, is it kind, is it necessary. If you can't say yes to all three, don't say it.

 

Here are some ideas to get you started:

CareerTrack* (www.careertrack.com) - used for professionals, but the same techniques can be used in any relationship. They offer workshops all over the country and dvd's of the workshops. There are a ton to choose from on all kinds of topics that could apply to your situation. (The two I've done: Assertive Communication Skills / Self-Discipline & Emotional)

 

Fred Pryor* (www.pryor.com) - I highly recommend Pryor seminars, they have the best speakers.

 

*If you are looking to purchase the dvd's, try looking them up on amazon.com. You can find more affordable options.

 

The remaining list is just some I've found online. I don't endorse any of these because I've never used them personally.

http://www.realhope.com/free_tips.php

http://well.wvu.edu/articles/the_language_of_love__communication_skills_for_couples

http://www.jdmcounselor.com/communication_skills_for_couples.html

http://health.howstuffworks.com/relationships/advice/communication-skills-for-lifelong-relationships.htm

 

And if you think about it the next time you're at a doctors appointment, have a discussion with him/her on this topic. Educate them on its importance so they can educate their other patients. Happy communicating, take the first step, make it happen.



Feeling your purpose

It's hard to not have a rough morning when you suffer from chronic pain. Every second is a trial and testament to our courage and strength to continue. But I can see the lose in so many, hear it in their words, see it in their eyes. I see it in my own mirror. It's heart wrenching to think that my life comes down to this. I had a really great career that I loved. I'm really good at what I do and I was going places. My son and I were really starting to connect and have fun together. My side hobby was dancing. I performed professionally in a tribal bellydance troupe throughout the state. I loved it. I was active, strong, organized. I knew what I wanted and how I was going to reach my goals. But things changed. I gained weight uncontrollably that the doctors couldn't explain. Then chronic fatigue hit and I slowly had to let go of all my physical activities and officially leave my troupe. The migraines became worse. They had been there on and off since highschool. Then insomnia and finally, the pain started. Just in my back at first. So I decided to get regular massages. They didn't help, in fact, my pain kept increasing. My next step was a chiropractor. She put me on a regimen of chiropractic work, massage, acupuncture, physical therapy and using a tens unit. It sounded like a good plan to me, but the pain continued to increase until no one could even touch me. So I went to my doctor who immediately gave my narcotic pain killers. That didn't end well, and I found a new doctor.

Now, after trying every non-narcotic pain medication there is out there I'm on two different ones that help 'a little bit'. But my doctor is out of options. I've seen all the specialists, they all agree on the treatments I've received thus far. But now I'm back to square one. I'm going to look for a pain specialist and see if there are other options available. Do we simply have to deal with taking stronger medications that will cause addictions? I'm at a lose. I'd like to try acupuncture again. I'm also trying Ayurveda herbs (Ashwagandha in particular) and looking more into trying gluten free again. I'm really not sure I have a lot of options left to me, but I'll never stop looking.

My story seems to mimic so many. Gone through multiple doctors, been thoroughly used as a guinea pig for every medication known to man. And you're still waiting for that pill, that exercise, that stimulant that, may not totally take away the pain, but definitely decrease it to a more manageable level.

I see the lose, but I also see determination in the creased brows and firm lips, the pinched checks, and exclamations of hope. Every day we wake up, every day we take one more step closer to finding our answers to our conditions. This is a war we are all fighting, for many it is a very long war. But we must remember that a war cannot be won in a day. We must take on each battle as they come our way. Eventually, eventually there will be an end for each of us. Better medications, supplements, homeopathy, doctors, research, therapies...something. It could be different for each of us, but we'll all get there. We have to, because we're here for a reason, and that reason is NOT to live in constant pain and watch our lives fall apart around us. No god would ever condone such a life sentence. We are meant to find our answers to this so we can live productive lives. So we can feel our purpose.

I know all to well how impossible it seems to keep fighting when depression and anxiety reaches its gnarled hands up from the depths of the earth and grab ahold of you. It feels like the world is no longer a place you want to be. You question how you can keep doing this, day after day, with no relief. You question whether you are more of a burden to your family and if they would be better off without you. But I've found that these things aren't me, they're just the depression trying to use me as some kind of puppet to spew its filth and vile hatred. And yes, we have all succumbed to it at times. But eventually we have each crawled out of that hole and back into the light again. For our partners, for our children, for our family, for our jobs, for our friends. We fight our way back because they do need us.

This isn't an easy journey. But its a journey that has already proven how remarkably strong we all are, or we wouldn't be here right now. Our strength lies in our courage to wake up each day and keep going, to try again. And every day we get a little closer to the end. We may not see it until we're literally on top of it, but its coming. So the next time we wake up and know from the start that its going to be a rough morning/day, just take a minute to slow down, close your eyes and place your hand over your heart. Feel it. It keeps beating. That's your purpose. Feel it. Be it. Never give up hope. Brightest Blessings!

The Ivory Castle

I'm not going to say how long ago I wrote this, because it's slightly depressing, but this is my first narrative essay which I wrote in my early college years. I like the story and am hoping to one day turn it into more than a short story. So, here you go...

From the balcony, Jennifer Waters watches anxiously as people enter the New York City Art Gallery. She listens to the buzzing of voices down below.
"Who is the artist?"
"Has anyone met her?"
"Has anyone seen her work?"

Jen snuck into the gallery earlier that day to make sure everything was in place. The first part of her exhibit was placed on a black pedestal in the center of the room, and uncovered for the public to see. The second part of her exhibit, the photographs, were arranged along the four walls, and hidden behind heavy black velvet curtains. The balcony, circling the entire room, would give her the perfect spot to observe everyone entering the gallery without being seen. Now, all Jen had to do was wait for the gallery to open their doors.

Already a crowd has gathered around the center attraction, the ivory castle. Standing almost two feet high it looks as if it came straight out of a medieval fairytale. A gothic castle carved from one of the largest pieces of pure, snow-white ivory ever seen. It is as smooth as glass, and so fragile that the softest touch will shatter it into a million pieces. Every tower, every stone carved wit such precision it must have take the artist a lifetime to create. A work of art, so extraordinary mere words can not describe it, towering above the awestruck onlookers from its pedestal. How any one person was able to create anything so exquisite is beyond imagination to those looking upon it.
"What a spectacular piece of art!"
"It's the most exquisite work I've ever seen."
"I wonder if it's for sale?"
"It would make the most wonderful conversation piece in our home."
"How much do you think it's worth?"

"If only they knew what it took to get it here," Jen thought. "The government papers and regulations, trying to convince the US Government to allow ivory into the country is no small feat. They'll find out soon enough." She was warned that such a drastic move might not go over well with the public, but it is a risk she knows she has to take. They may be shocked, but once they see and hear what she has to say they will understand.

Everything is going exactly as Jen hoped. Those gathered in the front gallery are mesmerized with the ivory castle, unable to take their eyes from this masterpiece of pure perfection, but like every castle with its magnificent architecture and lush gardens comes a dark secret lying hidden from within its walls.

The crowd forming below is anxious to meet this mysterious artist. As frightened as Jen is feeling about what their reaction will be to her exhibit she knows she must do this. Nothing will change without their help. The atrocities and murders being committed will continue unless someone opens the publics' eyes to the truth.

She slowly descends the stairs as the faces below turn towards her. All eyes are on her as she clears her throat, takes a deep breath, and begins to speak. "Hello, I thank each and every one of you for coming tonight. My name is Jennifer Waters, and I'm the artist everyone has been talking about."

The crowd begins to applaud. "I hope they're still applauding with this is over," she thinks. As the crowd settles down Jen continues.

"I am a wildlife photographer, and have just returned to the states from a one year expedition in Africa. I was drawn there for the opportunity to study the wildlife and culture. It was one of the most rewarding experiences of my life, but it was also one of the most devastating and eye opening experiences I have ever had. I, probably like many of you here tonight, was unaware of the poaching that's even now running ramped in many parts of Africa, and this is what has motivated me to put together this exhibit. I ask two things from all of you here tonight, first, take a long, hard look at the ivory castle, and think of what it represents to each of you. It's a priceless work of art, and I would like to thank everyone who assisted me in obtaining it as part of my exhibit. The second, is that if after seeing the photographs you are as moved as I have been, please take a few minutes to look over the literature being passed out. Now, if I can have the curtains opened."

On queue the curtains are drawn back and the photographs reveal themselves. Gasps come from among the crowd as Jen stands silently at the foot of the stairs, for what meets their eyes is death. Along all four walls are photographs of animals that have been brutally murdered for their ivory, the glassy eyes of once majestic creatures starring back at them. African elephants and rhinos, once free to roam the earth, are now forced to flee for their lives. Merciless, bloodthirsty men with only dollar signs in their hearts stalk these creatures until one can be singled out from the herd. Cornered, the animal tries to fight for its life, thrashing and stomping trying to find an escape. The men maliciously move in, spearing and shooting the defenseless creature as it screams in agony for help. As the animal becomes weak from loss of blood their tusks and horns are viciously torn and chopped from their bodies wile they are still alive. They are then left in a pool of their own blood to die a slow and agonizing death. The men who are capable of such malicious acts of brutality sell the ivory to the highest bidder, so it can then be resold to the public. Anyone purchasing even the smallest piece is guilty of contributing to the continuance of this viscous, inhumane act of murder.

There is complete silence in the room as small groups gather before each picture, slowly moving from one to another. Jen watches each of their faces. Some are angry as if they want to scream at the top of their lungs at the injustices of the world. Others have tears slowly running down their faces, but in the eyes of each person is the look Jen was hoping for, the same look that was in her eyes when she knew she would dedicate her life to stopping the senseless murders of these beautiful creatures.

Jen slowly walks to the front of the crowd, "I realize that these photographs are extremely disturbing, but nothing any of you see here can compare to being there, to actually seeing these animals, their lifeless bodies laying before you. The rancid smell of death and decay assailing your nostrils, the sound of vultures overhead waiting to flock in for a free meal, even the strongest of men become ill. It's beyond any emotion any of you have ever felt before. It's now my life's work to do anything and everything I can to stop this, and that's why all of you are here tonight. I need your help. The public must be aware of what is going on even as we speak. As more people become aware, the sale of ivory will drop, and once there is no longer a market for illegal ivory sales the poaching will stop. Become aware. Become involved. Make the choice of life, not death."

A few hours later, as the crowd slowly files out of the gallery no one could bring themselves to look upon the ivory castle, a memorial to so many slain animals. A few hours later, as Jen walks out of the gallery to her car a single tear runs down her face, knowing the first battle of a very long war has been won.

___________________________________________________________________________________

Although the story is a work of fiction, the description of how the poachers kill these animals is accurate. It takes too long to actually kill them, so they hack at them and shoot them until they are too weak from blood lose to move or fight back. It breaks my heart to think there are actual human beings in this world who are capable of this level of brutality. But there are. If you are interested in learning more on this subject, below are a few links.
http://mg.co.za/article/2013-03-07-25-000-elephants-poached-in-africa-1
http://wwf.panda.org/what_we_do/endangered_species/rhinoceros/african_rhinos/poaching_crisis_african_rhinos/
http://www.bbc.co.uk/news/world-africa-21018429

Mourning your lost life...becoming a survivor

When sat down by a doctor and explained that you have an incurable medical condition that could become completely debilitating to you, cause you daily pain, and change every aspect of your life. You die. Your physical life has died, your career has died, your ability to care for your family has died, your ability to enjoy the intimacy between yourself and your partner, has died. But your lungs still breath air, your heart still pumps, and you must create a completely new life in spite of your medical conditions. If you're lucky you have a good medical team to assist you with changes regarding your health and what you need to do to really take care of yourself, but many of us don't get that. And the fight begins, to find the right doctors, therapists, friends and family to make up our new support system.

This journey into this new, strange and painful life is fraught with challenges. Trying to get our friends and family to understand what we are going through; and trying to understand it ourselves. Trying to find doctors who will help us. Trying to work, take care of a home, be there for our family, still be a friend, hobbies, interests...and lets try to do all of this while your body is literally spiraling out of control. This journey isn't easy, depression and anxieties set in. We turn in on ourselves. We stop doing all the things we used to love. We turn away from those who care about us and need us. Our pain grows. Each day is filled with challenges that we can't understand, we are tired of facing, and we just want it to stop. We lose everything from our old lives. We need to mourn our old self. That person no longer exists, and that person isn't going to come back. That person died the moment the symptoms started to affect your daily life.

You need a way to mourn the lose of that person you used to be. Psychologists say there are steps in the grieving process. There are no rules to grief, no steps or stages except our personal journeys which are unique to only ourselves. It will take us as long as it takes us. But at some point we need to let go. We need to live in the present and leave the past where it is...in the past. Perform a memorial service for your old self, set up an alter, write a letter of everything you feel about your old self - and burn it. Give yourself permission to scream and cry; gut wrenching and messy. Do it, do something, just do it.

There has to be a life waiting for each of us after fibro. I honestly believe that the challenges and trials we face in our lives are for a reason. There is something that we must do. Research and find the perfect doctor, reach out to others, set up an organization that helps fundraise for research, work on education of the public or maybe just your friends or family. It doesn't necessarily have to reach a large nationwide audience, but there has to be something. We never know how we are going to really affect those that come into our lives through blood or choice.

We need to embrace our new normality. Stop being afraid to ask for help. And be grateful for each and every little thing we have in our lives because there is always someone out there who has it worse. We are blessed for all of the things we have in our lives; we need to concentrate on those. Meditate on them. Find what you need to help put your body in a state of peace: cold/hot packs, aromatherapy, water therapy, acupuncture, medications, music, yoga, meditation, deep breathing. The options are truly limitless, we just need to find what fits us. What works for us.

We cannot allow fibromyalgia to become our identity. We are so much more than that. Its just one piece of our puzzle. Yes, we suffer from fibro, but we are also parents, children, grandchildren, partners, lovers, friends, co-workers, educators...fibro is not the end all, be all of our existence. We cannot let fibromyalgia run us over and take our lives away from us, we are not the victim of fibro...we are the survivors of fibro. We need to remember this. Every day that we wake in the morning, put a note on your nightstand or on the bathroom mirror so you'll see it first thing in the morning. I am a survivor!

This journey into this new, strange and painful life is fraught with challenges. Trying to get our friends and family to understand what we are going through; and trying to understand it ourselves. Trying to find doctors who will help us. Trying to work, take care of a home, be there for our family, still be a friend, hobbies, interests...and lets try to do all of this while your body is literally spiraling out of control. This journey isn't easy, depression and anxieties set in. We turn in on ourselves. We stop doing all the things we used to love. We turn away from those who care about us and need us. Our pain grows. Each day is filled with challenges that we can't understand, we are tired of facing, and we just want it to stop. We lose everything from our old lives. We need to mourn our old self. That person no longer exists, and that person isn't going to come back. That person died the moment the symptoms started to affect your daily life.

You need a way to mourn the lose of that person you used to be. Psychologists say there are steps in the grieving process. There are no rules to grief, no steps or stages except our personal journeys which are unique to only ourselves. It will take us as long as it takes us. But at some point we need to let go. We need to live in the present and leave the past where it is...in the past. Perform a memorial service for your old self, set up an alter, write a letter of everything you feel about your old self - and burn it. Give yourself permission to scream and cry; gut wrenching and messy. Do it, do something, just do it.

There has to be a life waiting for each of us after fibro. I honestly believe that the challenges and trials we face in our lives are for a reason. There is something that we must do. Research and find the perfect doctor, reach out to others, set up an organization that helps fundraise for research, work on education of the public or maybe just your friends or family. It doesn't necessarily have to reach a large nationwide audience, but there has to be something. We never know how we are going to really affect those that come into our lives through blood or choice.

We need to embrace our new normality. Stop being afraid to ask for help. And be grateful for each and every little thing we have in our lives because there is always someone out there who has it worse. We are blessed for all of the things we have in our lives; we need to concentrate on those. Meditate on them. Find what you need to help put your body in a state of peace: cold/hot packs, aromatherapy, water therapy, acupuncture, medications, music, yoga, meditation, deep breathing. The options are truly limitless, we just need to find what fits us. What works for us.

We cannot allow fibromyalgia to become our identity. We are so much more than that. Its just one piece of our puzzle. Yes, we suffer from fibro, but we are also parents, children, grandchildren, partners, lovers, friends, co-workers, educators...fibro is not the end all, be all of our existence. We cannot let fibromyalgia run us over and take our lives away from us, we are not the victim of fibro...we are the survivors of fibro. We need to remember this. Every day that we wake in the morning, put a note on your nightstand or on the bathroom mirror so you'll see it first thing in the morning. I am a survivor!

My Writing Continues???

So I've been trying to come up with what I can do in order to prepare myself for possibly needed to go back to work at some point. I've discussed this with my husband, of course, and he likes the idea of expanding my writing and photography...doing freelance work while I continue to work on my novel. I can submit shorter pieces for publication and continue to grow my portfolio. And, most importantly, I don't have to be in an office. I can work from the comfort of home so I have my physical needs met. Having a chronic pain condition makes thinking of getting up each morning and trying to make it into an office by 8:00 am a complete and total nightmare of epic proportions. Just the stress alone of whether I could make it there...and stay there for the entire day. I don't think I'd be able to physically do that right now. My condition appears to be getting worse, not a good sign. And not exactly something that will get you a job, or let you keep one if by some miracle you are hired by someone.

My college education is in visual communications and graphic design, photography, and writing. I can take courses and research how to do freelance editing as well; I could make this work. But first, I need to start getting myself published again. My previous published articles were all in journalistic style. Very fact based, analytical. The kind of writing I'd like to do is quite different. I've been a practicing Wiccan since I was fifteen years old...so for twenty years. There's a Wiccan/Pagan magazine and ezine that takes submissions for publication. So I say...why not? I can write about my faith, what I do, challenges I have had, or what ever special topics they are looking for.

There should be other publications that take freelance contributions, I just need to find the ones I like and start submitting. The same with my photography. My husband reminded me about all the photo contests that happen all the time; just need to start submitting. I can even sell my photos on a website, blown up poster size. It may not bring in a lot of money, but it'll bring in something eventually and I'd be able to contribute again, find something I can actually do with my pain condition.

That's really one of the worst parts of all of this, besides the actual pain that is: the lose of everything you were able to do before. I had a career, a dance troupe, physical activities that I loved to do...that life has died. I'm still mourning that life, I just don't want to let go of it yet. I can't bring myself to say that I'm going to have this disease for the rest of my life and say goodbye forever to all that I was. I liked who I was, the dancing, the career, my yoga, pilates, zumba...I felt good. I looked good. I can't say goodbye to that, I want it back to much. I'm still fighting, which doctors say I need to stop doing. No fighting, but continue to educate myself on treatments and research, and accept that for this moment, I have pain. This is extremely difficult, especially when you try to say it, but your insides twist into a knot because deep down you don't feel the truth in that statement. I still feel that acceptance means giving up. Maybe my doctors need to come up with a new word that isn't so negative to me.

But, regardless of my issues with acceptance of my current condition, I'm going to try to write and submit for publication again. Wish me luck!

The fibro ailments catalog

I've been reading a site with others who suffer from fibro and other pain conditions. I agree with my husband that its important to communicate with others who know what I'm going through, but at the same time it can become overwhelming. All of the lists of fibro related ailments, new information being researched and posted to help answer questions for us. It can seem like an endless battle that will only become worse as time goes on. I don't have to just look forward to a life of chronic pain, but depression and anxiety, pain flares, fibro fog and memory loss (short term and long term), muscle spasms and twitching, continued insomnia, muscle weakness and inability to lift or use my limbs, eye sight issues, more migraines, the list just keeps going on and on. Is this really what I'm looking forward to as I get older? What am I going to do to my family? My husband and children will  have to watch all of this up close and personal. How can I say that's ok? They deserve someone who's healthy and strong, and I'm just not that. I can't even come to terms with my situation and diagnosis, how on earth can I expect my loved ones to do it? I love them all so very much, but I don't want them to watch me deteriorate. I don't feel like any of this is making me stronger...how can I do that? How can I make this an experience for my family that won't leave them angry and frustrated at me?

Does anyone have any ideas???