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???

Day 2...the numbness continues

Day two, I don't feel anything. Not happy, not sad...just nothing. Late last night, I got angry. My husband posted a joking picture on FB and I exploded when I saw it. It wasn't meant as anything...I rationally know that, but I lost it and posted a not very nice response to this picture. In his words...I publicly castrated him. I deleted the comment I made very soon afterwards and apologized to him, but I just lost it. I've even had to go so far as deleting this image from my FB news feed so I won't even have to look at it. I think I prefer the current numbness to the raving lunatic I turned into last night. But now...we're back to numbness.

My husband is worried about me. I understand that. But this is how I'll get at times, dealing with the pain. Dealing with my daily stress. My mind just says, "that's enough, we're shutting down for the day", and this is what I end up with...numb. Well, until I get angry about something...then I really get angry. Then maybe I'll cry...then numb again. Maybe this will last for a day...a week...I don't know. The joys of depression from chronic pain. I wouldn't wish this life on my worst enemy.

I wish I could keep this part of me away from my loved ones, but I don't think that's possible. Eventually, as my husband is just now finding out, I will break and fall apart. He's desperately trying to help me, I know this. We will have a wonderful life together...but no matter how wonderful everything is around me...I'm still in pain. That will never stop, never give me a break. No matter what...it will always be my constant companion. Which makes me feel alone, because I can't fully explain this to anyone. They aren't in the constant pain I'm in...how on earth could I even expect them to understand. In my life, in my pain...I am completely and utterly alone, regardless of how many people are physically around me.

How do I explain this to someone I love with all my heart, but know they'll never really understand?

Emotionally Numb

If you ask me how I feel right now...the only answer I have is nothing. Emotionally, I feel absolutely nothing. So what does this mean? My mind/body has hit the massive brick wall of stress. I've shut down because I cannot deal with any more. Our mind is a funny thing I suppose; emotionally I'm numb, physically my body is on fire. Why can't my mind give my body a little of this numbness? I would like to be able to cry, but I can't. How the hell am I going to get my feelings back? Maybe I'll meditate on this little problem and some great and powerful wisdom will reach through the ether of time and space and give me an answer. And while they're at it...a cure for fibro. That would be nice to.

I wish I had a healthier reaction to my stress...but no...lets repress and block it all from the mind, and then stab a million red hot pokers all over the body. Yeah...now that sounds like a good time. You've gotta just love the irony there. But, at least I'm not having a nervous breakdown...yet. Gotta keep your eye on the positive, because my life is getting tossed around like one of my dogs toys when he really gets it into himself to utterly thrash it. And all I can think of...what's next?

Kids and fibro...am I a good mother?

I've seen many comments recently on mother's feeling like they aren't good mother's because of their pain conditions. It keeps us from running and playing with our kids; we can't even begin to try and keep up with them. Many days are spent resting in bed or on the couch. Maybe ten minutes of activity here or there, but we feel inadequate as mothers. But the truth is, we shouldn't. The mere fact that you ask yourself if you are a good mother makes you a good mother. You're willing to take an honest look at yourself. That's a leg up on all the women in this world who feel fine each and every day, and rather than use their health to be with their kids, rather than being grateful that they can run and play with their kids, they push them off on anyone else so they can do other things. I would much rather be the mother I am right now than one of those. Yes, our abilities are different. Yes, we have to severely limit what we physically do, but physical activity is not what we cherish most about our parents as we get older. We cherish the words, the time, the love. Those things are not attached to physical movement, they come from deep within us. The part of us that can't be touched by pain. The part of us that would give their life to save that of our children, to insure they are happy and healthy every day of their lives.

We are good mothers by our words of love to our kids, by the time we spend with them regardless of what we are doing, and by our attitude towards our life and health. The greatest gift we can give our children is to love and care for their mother because we are the only one they will ever have. No one will ever take our place in their hearts. Regardless of our physical abilities, we set an example for our children by who we are as people each and every day. Love yourself. Care for yourself. Be patient with yourself. Be grateful for every day you have that you can tell your children you love them. Be honest with them. They can understand far more than we think they can. I can guarantee every mother who suffers from this disease, your children will love you in spite of your medical conditions. They will see you for who you are deep within your heart and soul. Just don't shut them out.

We are amazing mothers, capable of amazing feats and strengths that far exceed that of the average mother because of our conditions. And we are raising amazing kids who will learn through us to be loving and empathetic to all human beings regardless of their physical abilities. This is a life lesson we are uniquely suited to teach, which makes each of us one of the best mothers on this earth.

Fibromyalgia

 

I was diagnosed with fibro about a year ago, but my symptoms have been coming on for the last 5 years. I'm on long-term disability because of the severity of my daily pain. I miss the girl I used to be. She was a dancer. She danced professionally in a tribal bellydance troupe, did fire dancing, latin/ballroom dancing, yoga, pilates and zumba every week. She would exhaust people just telling them what her weekly schedule looked like. But then something happened and everything changed. Her body betrayed her and she died; I was born in her place. I weight 50lbs more than she did, my hair is frizzier, my memories are a little worse for wear so I keep my notebook on me at all times. I can't stay active like she did. I'm lucky if I can take a long walk to just keep my muscles moving. I tried to keep working, but as my pain levels increased, everything I used to be able to do slowly faded into a misty, depressing memory. I'm now on long-term disability which will run out this October. I'm trying to take stock of how I feel right now. Do I think I'm capable of handling a regular work schedule? No. Do I think my pain levels are/will decrease in the near future? No, they have been slowly increasing in level. But because of the stigma surrounding my diagnosis, do I have the right to request permanent disability? Is it right? Half the medical profession doesn't seem to take it seriously, so how can I say that I don't feel like I can or will be able to work in the future when the medical profession still sees FMS as a "fake" disease, only in the head of the patient.

Thoughts, feelings, comments, advice? I'd be interested in seeing them.

Thanks and Blessed Be!
Cali