The Weather and the Very Icky Day

We all have bad days where keeping a positive outlook is impossible. Where we feel like we’ve been hit by a tractor trailer or run over by a train. We react to the weather and can predict it better than weatherpeople can. I like this blog post by Seeking Equilibrium about the average daily pain we all become accustomed to living with and the off-the-charts, please-make-it-stop pain that makes us crawl in bed and pray for sleep until the flare is over.

Recovery 101

Recovery 101

I’ve been working through a lot the past year and a half, and perhaps most especially the last few months. I came across this this morning and it struck a chord so I wanted to share. I think of all the lessons I have learned, “You will relapse and that’s okay – as long as you keep fighting,” is the most important. I’ve been frustrated by the feeling that I recover from one physical ailment just to have another one come at me that I have to deal with. Life is a rollercoaster sometimes and sometimes all you can do is roll with the ups and downs as they come. I’ve also learned to get the most enjoyment out of the “ups” as I can. It’s important to enjoy those times while they last. They help you get through the “downs.”

The Fibromyalgia Series Part R

Reblogged from Seeking Equilibrium

R – is definitely for remember. Fibromyalgia is tough on your life. Most of us were Type A personalities that would thrive on the stress of our lives or careers. Once this lovely syndrome Velcros itself to us, we remember with longing our lives and for those of us who lost it….our careers.

R – which brings us to reinvent. If you lost your job or career, Fibromyalgia causes you to have to reinvent your life purpose. This is a tough one. I still struggle with this one but every time someone comments how I’ve helped them I know that I’ve found something that I wouldn’t trade for the world. It has given me a creative outlet and it’s given me purpose.

R – is for reluctance. Even though I’ve found an outlet, I’ve been reluctant to let my old life go. I still go through periods of longing and wish I could try sales again. Every time I think I can do it a doozy of a flare serves as a reality check. Ooh……another R.

R – Here we go. Reality check. Like I said…..just when I think I can disregard my body and run headlong into another idea, a flare comes along and slaps me and says….”not so fast…”

R – is for rebellious. Yes, I’m a rebel. Just look back at the other words. I try to live in a way that is kind to my body but every now and then I say…..eff it and push myself. I need to keep saying…”if you push you will pay.” I cannot forget this because it is true.

R – is for relax. I need to do this more often. It’s not in my nature to live on the comatose side of life but I push too much. If we just close our eyes….shut out the world…..it will help our pain. When life’s challenges come at us: just relax.

R – is for recognize. Listen to your body and recognize what it’s trying to tell you. I know that my flares usually start in my hands. I’ll start rubbing them and then, before I know it, the old familiar ache starts to spread throughout my body. It’s also very important to write symptoms and feelings down for your doctor. I hope you have one that listens to you.

R – is for reminders. When the fog hits and you don’t know why you walked into a room it’s helpful to have little reminders around. I make lists and lists in my phone. I have all my appointments in the calendar. What screws me up is that I forget to look at my phone.

R – is for those restless nights. Even though we have fatigue, we don’t get enough restorative sleep. Thank goodness for my iPad. I don’t know what I’d do without it. To try to get to sleep, I spray lavender on my pillow and I use melatonin tabs called Mid Nites. I know there’s medication to help sleep but I take muscle relaxers and pain medication. I’m afraid to take a sleeping pill on top of that.

R – is for responsible. Remember that all medications are powerful and we need to be responsible with them. That means responsible in taking them and responsible in where we keep them. If you have others in the house with you take care who has access to them.

R – is for relatives. My hope is that they recognize what is happening to you and don’t make you feel like your faking it or being lazy. Fibromyalgia is real. It’s tough enough to deal with the symptoms of this illness without friends or relatives making it worse. If you have people in your life that don’t believe you, get to a support group. Reach out….it will help you. None of us can go through this alone.

R – is for realization. Fibromyalgia isn’t going away and right now there is no cure. We need to learn management tools so that we don’t get overwhelmed. Fortunately, there is a research going on out there that may help point to a cause.

R – is for renewed. I may not get enough sleep but each day I wake up feeling a sense of renewal. I know that life could be a whole lot worse so I try to be grateful for each day. Gratitude and laughter go a long way.

R – is for rewarding. Thank you so much for reading my blog and commenting. All of you have truly given my life a direction that has so much meaning. It truly is one of the most rewarding things I’ve ever done.

and lastly…..

R – is for ridiculous. 

Reduce it down to the ridiculous and find something to laugh about each and every day.

Find joy and happiness and love.

Sometimes the pain makes it very difficult but find it…in spite of the pain.

Collateral Damage

Reposted from Seeking Equilibrium.

I liked this post and wanted to share it. The graphic is a great graphic for the invisible face of pain too, I think.

two faces collateral damage

Why?
Societal pressure?
Weakness?

We are our own worst enemy. Every day we have to fight a war. War against pain, war against fatigue, war against an invisible illness that most don’t understand, war against indifferent doctors and war against pharmacies just trying to fill our prescriptions.

Why then do we turn the war on ourselves?

I’ve been to support meetings and read blogs and hear people talk about medication. Some even seem proud that they don’t and haven’t given in to prescription medication. That’s good if it works for them but to make anyone else feel less than human for taking them is wrong. Using medication that you might become physically dependent upon isn’t a sign of weakness. That is an unfortunate side effect of maybe feeling normal and productive.

We err on the side of the addict.

Maybe we’re trained that it’s greedy and selfish to want something for ourselves. All I know is every time I swallow a pill I feel weak.

And that, my friends, is stupid.

If we are responsible and knowledgeable about the power of the pills, if we “follow the rules” then there shouldn’t be any self-loathing about using narcotics or pills that help us get the restorative sleep we need. When did it become the norm that suffering is noble?

It isn’t.

We can do so much more when pain isn’t creating havoc in our bodies. If we can sleep then maybe, just maybe, we won’t be as stiff and sore in the morning. If that happens maybe, just maybe, we can get the exercise that we need. Don’t people get it? It’s a vicious cycle. We need exercise but it just hurts too much to start.

I think we need to like ourselves a little bit more and not look at medication as weakness. There are a lot of therapies out there and every one of us need to tweak them for our own use.  I don’t think we should feel bad for wanting to feel better.
We fight a war every single day.
And sometimes it feels like we should give up.
We can’t.
And we shouldn’t be one of the civilian casualties.

Fibromyalgia’s Invisible Face

Originally posted on 8/14/2012. Thought I’d repost one of my favorite blog entries on this New Year’s Eve.

Purple butterflies are often used to represent fibromyalgia.

Purple butterflies are often used to represent fibromyalgia.

My boss and I happened to leave work at the same time yesterday, so we had the usual elevator chat, this time about our pets. Half of my brain was focused on conversing with her, and the other half was thinking how I couldn’t wait to go home and rest because my head was really pounding and I was achy all over. It struck me then that my boss must wonder why I have to stretch a lot at work and take walks when I need them. When you look at me, you don’t see anything wrong. It’s not like I have a broken arm or something visible like that. I’m usually in a good mood too. My rheumatologist has told me that research has shown that fibromyalgia sufferers have a degree of pain reduction and fewer flare ups when they are able to keep in a mostly happy, optomistic frame of mind. I really work hard to keep this outlook now as I’ve noticed it does help over the long haul. It is not an easy thing to do and there are many days that I fake my cheerful mood until I actually am cheerful. So not only do the people I pass every day at work or in town not see anything wrong with me, when you talk to me I don’t sound sick. I’m not coughing up a lung or losing my voice. I look and sound healthy.

I wish I was an artist and could draw the face that everyone sees and then draw the face of pain behind it. That ugly face with scars from battling chronic pain for years. The battle-worn and weary face of a career soldier battling fibromyalgia all day, every day. Those two faces would look so different as to startle the viewer, I think. But no one can see our pain-weary faces. They only see our healthy looking bodies, not the pain and emotional upheaval inside. Most of us hide the emotions we feel in response to living with chronic pain. It’s either hard for us to show that to people, or they don’t understand it anyway so what’s the point? We fight our pain every day, but it is an all but invisible to those around us. Those closest to us see our efforts but they cannot see our pain. They empathize as best they can but that pain we experience day in and day out is not visible on our bodies. It’s not a wound they can see and try to help us heal.

The face of fibromyalgia is an invisible face. No one can see it or feel it but us. I think the world would have a better appreciation of what we go through, the daily battle we wage, if they could see the true face of fibromyalgia. Instead, people see normal, healthy looking people who have problems doing their job for some invisible reason they say is chronic pain. No wonder some people just do not believe in fibromyalgia. They can’t see any evidence of it and seeing is believing. We struggle every day to do our jobs, take care of our families, take care of our homes, etc., all while combating our pain. It isn’t fair but it is our reality. So much of our existence is invisible to everyone around us. Maybe that’s why I hate the “How are you?” question so much. I can say I’m doing okay today or that it’s not one of my good days, but that doesn’t mean anything to anyone because they can’t see it with their own eyes.

What do you think the invisible face of fibromyalgia looks like?

Quote of the Day – Life Lesson

“The hardest thing to learn in life is which bridge to cross and which to burn.” –David Russell This is so true. My natural inclination is to never burn any bridge and to keep everyone liking me. Well, that takes way too much effort, I’ve learned, and you don’t get a good enough return on your investment of so much time and energy. Sometimes you just have to burn a bridge and get on with your life. It hurts but it’s a necessary pain I think. Or at least that’s what I’ve learned in life. And sometimes the bridge you need to cross is the harder path, the path less travelled as one of my favorite poems says. But the harder the path, the bigger the reward, or so I continue to hope.

Remembering Nelson Mandela

Nelson Mandela

South Africa and the world lost a great man yesterday. As President Obama said, he doesn’t below to us anymore, he belongs to the ages. I grew up hearing of his struggle in the news. I read about him in textbooks. I studied him in my Political Science classes in college. I’ve followed his life and career for much of my adult life. In college, I especially enjoyed learning about him. We spent so much time in college studying the Founding Fathers and other US political giants, it was nice to read about someone who was alive in the present world political climate. Not only alive, but a pillar of humanity who had made so many amazing changes in his country and kept struggling every day to better the lives of his people. He was a modern-day hero, as NBC News termed it last night. I loved that he practiced what he preached. And his words always rang with such honest conviction. When he spoke, the world stopped to listen.

As a student of political science, I admired everything that Nelson Mandela accomplished, first as a protestor and revolutionary and then as president of his country. He was instrumental in ending apartheid. Now, as a woman who suffers from fibromyalgia, I admire his strength, courage, and his ability to never, ever give up. I suffer from chronic pain every single day. I battle my own body every single day. The pain knocks me down all the time and I have dig deep every time to get back up and continue my fight. But this man suffered so much more and yet he never, ever gave up. He kept fighting the good fight, even when we was locked up in prison for 27 years. He served as a worldwide inspiration even from a prison cell, and perhaps especially because of this. His accomplishments and inspirational words will be remembered for generations to come. He will be missed.

Nelson Mandela quote