Monday, October 20, 2014

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.  

2 comments:

  1. Hi there, I'm Lindsey! I have a question and would love to speak with you, please email me when you have a chance, thanks!

    ReplyDelete
  2. Hi, Lindsey,
    Of course, I'd be happy to email you and will try to answer any question you may have. Peace and healing,
    Maureeen

    ReplyDelete