AND THAT LAUGHTER BIT........

So, there's this pain thing.  You know the one that consumes you and makes you feel so sick to your stomach that you long for the days of "morning" sickness (ahem....all day sickness).  Yeah, that.  The kind of unrelenting pain that you're just trying to focus on how to breathe never mind how you're going to get dinner or pick up the kids from school or buy that birthday gift for the party this weekend.  That's the pain that I'm talkin' about.  So, here's the thing.  Please don't stop reading my blog but.... you need to laugh.  We all do. 

Feel free to yell obscenities at the screen now.  Tell me off.  That's okay.  But hear me out.  I never said that laughing was going to remove the pain.  A few minutes of laughter is not going to change your diagnosis.  Laughing every day is not going to make me able to take dance class again or jeez, even vacuum.  Oooh.........imagine that!  Vacuuming is making the same sentence as taking dance class.  Watch out everyone!  Maureen is getting wild!!!

What I AM saying is that we DESERVE a break.  I deserve a small piece of joy each day.  Anyone living with chronic pain is worthy of happiness. Where can we find that sweet spot of intense euphoria?  Laughter, my friends.  There is a reason for that old adage, "Laughter is the Best Medicine".  Now, don't get me wrong.  I think we need to do a lot more than laugh.  But, if times are tough and life is dark, as it has been lately for me, please do yourself the kindness of enjoying a good belly laugh.  

Anyone who knows me is well aware of my love of a good joke.  I have a loud, hearty guffaw that has certainly caused hearing damage to my sweet husband.  However, I have been told I am a fantastic audience member at the theatre by my actor friends.  I am at peace with my laugh.  It is a big part of who I am.  It is vibrant, happy and yes, loud.  

The saddest thing to me was when I noticed recently how little I had been laughing.  I remember when Nicholas, my 14 year old, was small he was asked in kindergarten to write about his family.  He wrote, "Daddy works at TV.  Mommy plays and laughs"  I always thought that was the highest of compliments.  However, I began to worry a lot that my second son would have a very different description of his mom.

So, I began to seek out laughter. I started with DVR-ing The Ellen Show every day last year.  I'd be in horrible pain and within minutes of watching, the house would be filled with screams and snorts of laughter.  When the boys were at school, I would go to YouTube and watch Jimmy Fallon skits from his late night show.  My husband introduced me to a crazy, funny sketch called "Between Two Ferns" online.  I binge watched that one day while bedridden and cried.  This time, the tears were not from pain.  They were from hysterical comedy that took my breath away.

What a gift.  Laughter is a gift.  It is free and it is accessible to us all.  

Please use it. Comedic books, Lucille Ball, Jerry Seinfeld, The Three Stooges, NPR's "Wait, Wait Don't Tell Me" or whatever it is that cracks you up.  It doesn't matter.  Just find it and spend 10 minutes a day listening, reading or watching it.  

I know it seems like a small thing and I admit that it is.  However, laughter keeps us in the light.  Even if it is for ten minutes a day.  And, my friends, without that light we will get swallowed by the darkness.  

So, fight to stay in the light.  Fight with the 1% of energy you have in you and find the laughter. If you listen hard enough, you will probably hear me. If you get a migraine, you may live too close to my home.  :)

The Ugly Truth

This is an angry and sad post.  I'm not feeling uplifting or particularly positive so if you are uncomfortable with a potentially harsh look at chronic pain and the realities therein, I suggest you skip this post.  

People who know me well and who are close to me usually describe me as compassionate, caring and a good listener.  I try to be positive and though I get very down at times about my illnesses and pain, I continue to read, research and look at new possibilities for treatment.

After 19 years of pain and illness, I feel like I have a right to have a meltdown and I'm having one.  A gigantic, ugly, messy, angry meltdown.  I'm furious and want to punch a wall.  If only I could raise my arm without shooting pain.  And do you know how enraging that is to want, no to NEED, to punch something but to be unable to because it hurts too much?

If you do, then likely you, also, have suffered from chronic intense pain.  I'm very sorry that you know this feeling. 

Today I hate the world.  I am so angry that I can feel the red fire inside me and I can see red.  I haven't slept well in weeks due to pain and frankly, I'm sick of thinking positively, "Giving it to God", "being the change" and any other little tidbit of wisdom out there that I myself have already chanted into my brain.  Please don't start with me.  I've had it.

I walk around in unrelenting pain day in and day out.  I smile and laugh. I bring my kids to school and pick them up.  I ask about their days and encourage them and praise them about their work.  I get snacks and drinks and stay on top of homework. Laundry gets done and hugs are given. I email teachers and rally family and friends to purchase things for the latest fundraisers.  I organize music lessons and bring my younger one to Cub Scouts.  I get gas in the car, fold laundry and play outside with my kids. At night, I fall apart and fall into bed praying for sleep and relief. 

I have mums that have not been planted because when I did plant one, it sent me into the worst kind of pain spell that took me days to recover from. During which time, I still had to maintain my normal schedule. One weekend recently, I got really wild and cleaned our tiny upstairs bathroom AND did laundry.  That set me up for several days of muscle spasms and pain that left me in tears. My husband knew and my kids knew to an extent.  I shared with my online support group.  Otherwise, I continued to smile and wave.  Smile and wave.

Look, I don't rant and wail on Facebook about how much my life sucks and how hard it is to be in pain.  I post things about Fibromyalgia Awareness and Chronic Pain Awareness from time to time and I write this blog.  I haven't even written here in over a month because this past month has been horrible. I felt that I shouldn't write until things started to look up.  Until I realized that things may not look up for a while.  This is my life.  This is reality.  It may also be other people's reality. So, I'm writing.

Today, as the alarm went off tears streamed down my face. I had been kept up most of the night by pain.  The medicine that works for me in these intense situations, I get in limited quantities.  Therefore, I could not take anything all night.  I tried visualization, said my rosary three times, and used my heat pack and applied Tiger Balm cream.  It was the longest night and the shortest night all at the same time.  Getting out of bed was excruciating as my hips, knees and legs were taut bands of muscles bound together and on fire.  I took a deep breath and slid them to the side of the bed.  That's when my lower back decided to join in the fun and begin to spasm.  I gasped in pain.  I woke my 7 year old for school and half walked, half crawled down the stairs.  

My husband was already in action working on getting our older son ready.  My husband is a team player.  Actually, he's more like a solo act most of the time.  He does far more than he should and this was never in his contract.  It makes me deeply sad and I realize how fortunate I am.  Guilt has made a comfortable home in my heart like unwelcome vines of bittersweet twisting and wrapping around it making it difficult to feel much else.  

I put my sneakers on so that I can have a bit of support.  This elicits looks of confusion from both boys who ask where I am going.  I just tell them my legs hurt and feel better if I'm wearing my sneakers. They seem to accept this until my younger son excitedly asks if we can walk to school.  I tell him if he gets ready in time, immediately cursing myself knowing that this will be an impossibility for me.  But, why shouldn't my seven year old be allowed to walk to school with his mother?  Damn it!!!! I'm so tired of saying no to everything!

My husband leaves with our oldest son whom I wish a good day and an 'I love you'.  I receive a grunt, but he's 14 so, hey.  Fortunately for me, my little guy has some time management to learn so we drive. We chat happily in the car and I send him off with a big smile and an "I love you".  I wave and as I drive out of the parking lot I burst into tears.  I need to make a stop at the store for a couple of things.  I get there and sit in the parking lot with sunglasses on trying to pull it together.  The seat warmer is on and it soothes my spasms in my back and sitting feels good on my legs.  It is 8:10 a.m.   I have another 13 hours of my day to go.  

I force myself out of the car and walk slowly into the store.  I keep my sunglasses on because I can't handle fluorescent lighting and this is no day for a migraine.  I pick up the two things I need and head to the register. Thank God there is no line.  I get back in the car and turn the seat heater on and sit for another 10 minutes before I can bear to drive the less than five minutes home.  

However, this is the day that I am calling the pain clinic that I have promised my husband I would try.  I have not tried a new doctor since the last fiasco in January.  Yet, with my Myofascial Pain getting more intense and the change of season I have made a promise to my family that I would try, yet again.  This is a place where my husband has done some freelance video work and was impressed by the patient testimonials.  He has been after me for over a year and a half to go.  I have finally agreed.  

I get home, and make the call. This is huge for me, you see, because in 19 years I have found two, yes two, doctors who have been knowledgeable and compassionate about Fibromyalgia.  I have seen many more than that.  I have been to Boston twice.  I have been to a reputable hospital here in NH that is the "best" only to be treated like the dirt on this man's shoes.  I have been to approximately twelve different places and each time come away in tears, disgust and/or with a complaint form in my hand.  So, you see making this call was a big deal.  I called the number of the clinic with, much to my dismay, hope in my heart.  According to the website, what makes this medical facility stand out is the compassion and individual care from the moment a person walks in the door.  So, I call and guess what?  I get a recording.  If I am a new patient I need to press 2 and leave my information including my insurance information.  I hang up.  I'm not in the mood to be treated like a number today.  Just to be clear, I check the website to see what their hours are but they are listed nowhere.  I call back to see if I can find them on their voicemail menu but alas, I cannot.  

I'm nauseous from the pain, there is laundry to be folded, dishes to be done, errands to be run, dinner to be prepared, a chiropractor appointment to be made, and dead mums outside that I never finished planting.  All around me screams failure.   I crawl up the stairs and fall into a heap in bed and sob.   

I give the hell up.  Yes.  That is right.  Today I friggin give up and you know what?  I am allowed that.  I have a right to say that and until you have lived in my shoes day after day, don't you dare  judge me.  Today is my day and today I am not looking on the bright side, trying something new, meditating or anything.  Today I am sad, angry, grieving, exhausted beyond belief, my pain is a ten and it's only ten o'clock in the damn morning.  

I want to scream, cry and throw things.  I want to feel peaceful and happy again.  I want to be able to go outside and plant my mums.  I would like to just do the dishes and make dinner AND take a shower without feeling like I've run a marathon and need pain medication and a three hour nap.  

Self pity is an ugly thing.  It is not something I am proud of nor do I like to dwell here.  But, isn't it also important to be honest?  Isn't it crucial to know what really goes on behind the faces of people living in chronic daily pain?  I know it is uncomfortable to look at.  Believe me, I feel pretty darn awkward writing this.  However, I feel like I owe it to myself and to everyone else who struggles to maintain a "normal" life while living with Fibromyalgia, Chronic Myofascial Pain, Chronic Migraines and any other type of chronic pain disorder to tell the truth.  

The truth is that we have really bad days.  Even those of us with the best husbands, beautiful kids, faith and positive outlooks.  Bad days and bad weeks happen.  We want relief. We want to be understood. We need compassion.  We want doctors to stop looking at us like we are crazy or drug addicts.  

In the midst of trying to be courageous, sometimes we need to fall apart, too.  

Peace in the Midst of Pain

Peace in the Midst of Pain

For many years I have read articles, blogs, and books about the phenomenon of people suffering from terrible pain who were able to separate from their pain and find inner peace despite their afflictions.  I read of meditation, and even tried it.  Sadly, my ADD mind never seemed to cooperate.  Typically, this is how it would go: "I am still.  I am peaceful.  My pain is here but I am at peace.  I am, oh man I HAVE to remember to make that dentist appointment for the kids.  Oh!  And, I have GOT to remember to pay that parking ticket.  Why can I never get anything done?!  Oh no! My breathing!  Okay, start over.  Deep breath in, and out.  Damn, how did I miss that gigantic cobweb over there?  I wonder how long THAT has been there? Okay, seriously?  This is not working.  I feel more stressed than before and I have things to do! " 

In 2005, a friend of mine died of cancer.  I've lost a few really special loved ones to cancer now and each time it has been, well, awful.  Cindy, in particular, taught me a lot about being sick.  I watched her and she was real.  She cried, she motored through, she lived, she got angry, she continued trying.  In the midst of it all, her faith got stronger.  Cindy was the first person who taught me how suffering can be a gift.

I knew her cancer was spreading and when she first spoke of how suffering could be a gift, my assumption was that the disease was affecting her mental capacity.  I listened to her, nonetheless, and over time found myself drawn to her words.  In suffering and pain, she would say, we can find an inner peace and calm that is unavailable to us when we are well.  We also have more time to think of others.  We can pray more, and give more of our time to others.  True, we may not be able to cook, clean; shop but we can give the gift of time. 

How often do we Fibro Warriors get our self worth entangled in what we do for a career, how much we have "done" around the house, how organized our kids' rooms are, how many home cooked meals we have prepared each week, and how we should look? 

What happens when we fatigued, pain filled and teary eyed women, instead, stop for a few moments and look inside ourselves and listen to what is going on in there?  It is hard to do. I know!   We are living in a modern society that is not very encouraging of women to slow down.  Just Be.  We are the multi-taskers, the super moms, the "pretend it is all great with a smile on our faces and collapse behind closed doors sobbing women". We are supposed to be the independent women who say, "Oh, no. I'm fine. I've got this".  But, really, do we?   Of course not!  Certainly not every day.   Even women who do not have chronic illness and pain, need support and help. 

So, when we sit down and put our feet up or are lying on the couch or in bed, we have a choice.  We can take a few minutes to turn off the TV, unplug, and just breathe and close our eyes and listen.  If you are like me, you will have a bunch of random thoughts fly through your head similar to the ones from the earlier paragraph.  Smile and notice those thoughts and instead of criticizing yourself, you can smile at that part of you but continue to breathe.  Imagine what your insides look like or what texture they feel like.  Are they rough and red?  Angry?  Empty?  Do you feel knotted up in your stomach?  Do you feel just nothing? 

There is no right or wrong answer.  Just take the time to be aware of them.  Then notice your pain.  Where is it?  Sometimes when I do this, it is easier to find where my pain is not.  Well, let's see....my ear lobes don't hurt.  My pinky toe is feeling just ducky today.  Keep taking deep breaths.  This is not magic or rocket science.  This is not a cure or a way to make pain disappear. 

I am going to take a quick break here to say that in the past, these kinds of articles annoyed me.  Actually, that is an understatement.  They made me very angry.  When someone would suggest an exercise such as the one I am suggesting above, it felt condescending and seemed to diminish the pain and fatigue I experience daily.  I would equate it to someone telling me that the pain of childbirth is not really pain but a beautiful "sensation".  Um, yeah.  So, please stay with me.  I am on your side. 

However, I have had a recent breakthrough in therapy and I am learning how to separate my physical pain from my emotional being.  For example, I can be in a high amount of pain.  I close my eyes and I can feel my pain throbbing in my shoulders, neck, hips, knees, elbows, you name it. 

While I am still, I swear I can feel the vibrations of the pain ripple through my body.  It feels swollen, red and angry.  I am very aware of the pain.  I then look inwards and see what I see and feel there.  Where in the past I have had a constant large knotted ball in my stomach, I instead feel space.  I see light and openness.  I feel peace and calm.  For the first time, in probably the 17 years since my diagnosis, I feel no anxiety or depression.  What????  How is this possible?  How can I be in terrible pain but at the same time feel peaceful and calm?

My therapist specializes in working with people with chronic pain which is why I sought him out.  He has been trained in Somatic Experiencing & Somatic Psychology which is pretty fascinating stuff.  Not that I cared a speck about it when I first went to him.  I was in a depression so deep, I couldn't read a short fiction book for fun, never mind read about Somatic Experiencing and understand what I was reading.

In any case, after all of these years of reading about people with chronic pain, watching my friend cope with the pain of cancer, and not being able to wrap my head around how one can be in agony and still find inner peace, I think I am beginning to get it.

It is possible.  Just knowing we have another option as chronic pain sufferers is freeing!  So often we feel trapped, stuck in a corner, misunderstood. 

I am not saying this is THE answer to all of our issues.  However, it may very well be a valuable piece to the intricate enigma that accompanies our daily lives.  Obviously, we need to continue to trudge on as advocates for ourselves with the medical world, and strive for optimum self care.  Clearly, neither of these ideas is new to any of us.

The next time your body is screaming in agony and you feel like you are drowning in a sea of fatigue, just as you feel yourself falling prey to the shadows of anxiety or depression remember this.  Even if it is for a short period of time, you are worthy of happiness and a break from the darkness. 

Then maybe, just maybe, you can take ten minutes to sit and close your eyes and listen to what is going on in your body.  No judgments.  Just listen.  Observe and acknowledge it.  Look for any open space inside.  Envision light anywhere in your body, even if it is in the tiniest area. Imagine yourself at a time in your life when you felt giddy or in a place that made you feel safe and focus on that memory.  With a little bit of time, that miniscule area of light in your body will expand.  Keep a journal, if writing helps you.  Watch how your body stays the same and how it changes.  Most of all, remember; everyone deserves joy and peace.   They are attainable even in the midst of pain.

You may surprise yourself.  After all, you have made it this far.  You clearly are a warrior.