My Rock Bottom With Fibromyalgia by Kelly Slevin, Guest Post

Today I am scared.

I want you to know this because all of these things have culminated over the last ten years into what I deal with today and who I have become. It’s always been a goal to write my life story. If I don’t figure out how to deal with all of this, I may not have that chance. I know everyone has a story. I feel like mine is

important to share. For many reasons, but mainly to help myself.

When I turned 16, like every normal teenager, I got my driver’s license, eager to have the freedom and independence to begin to head out into the adult world and lead a life of my own. A life of my own choices filled with responsibilities and independence and fun and adventure and love and purpose... A life leaving behind the anguish I went through growing up, the one where I caught my mother naked in bed with another man in my parent’s bed when I was 5, the one where she eventually chose that man over my father and sister and I and left the three of us for good when I was 7. I would always wonder why my mom didn’t want to be with us, why we were so unimportant as to promise to come and visit and then never show up- leaving our noses pressed to the window in disappointment as every passing car proved not to be hers. Given she isn’t the best mother, she brought me into this world and for that, I love her.

My new life was also leaving behind the eventual step-mother whose absurd rules left me resentful toward both she and my father- I was 10 when they married and she was only 11 years older than me. Just some of those rules included things such as kitchen closing at 8pm, bedtime at 9pm, eating everything on the dinner plate whether we liked what she cooked or not and sitting there at the table for hours until everything had been eaten, washing our own dishes, packing our own lunches, being locked in our rooms when we were a bother and when we broke the rules, the punishments over the years ranged from slaps across the face, hairbrushes and wooden spoons whacked across our behinds, sometimes so hard the object would snap, to even being dragged up the stairs by my hair one time to be locked in my room. Although she may not have been my mother, and nasty at times, she was more of a mom to me than the one who gave birth to me, and I do love her.

At 13 I moved in with my grandparents because I couldn’t take it anymore, my sister came with me. My grandmother (my Mams) had always taken care of me. On top of all of the above, I had been a sickly child.  I had major surgery when I was 4 where they reconstructed the left side of my kidney to correct the defected tubes (I had an extra) connecting to the bladder. Mams had always taken good care of me when I was sick. I remember how sad I was one year when I was lying on her couch feverish and ill, watching Trick-or-Treaters coming to the door for candy. I miss her.

My little sister has always been my “rock.” Being 4 years behind me, she didn’t always necessarily know what was going on, but in my moments of sadness and tears, she would always give me a hug and tell me everything would be ok. She always made me feel better. I can’t imagine being here today without having had her in my life. I love her.

At 15 I moved back home. My sister came with me. The fights continued with my stepmother; even driving me to go so far as to lie myself across the railroad tracks behind my house one night. I’m not so sure I would have stayed there anyway, but the neighbor came over and made me get up. The fact that I even went that far should define the anguish I was feeling.

It's My Party And I'll Cry If I Want To!

I haven't blogged for a long time and it wasn't my intention to start blogging on this particular subject today. As a matter of fact, I actually started a different entry a few weeks ago, but had to set it aside because I hit a mental snag in my train of thought.

Earlier this morning, someone posted a wonderful, uplifting blog entry on my “Life with Fibromyalgia” Facebook page regarding what it feels like to have Fibromyalgia. Another person commented, “Great descriptions and details about how it feels but yet it didn't sound like a pity party...although there's nothing wrong with a pity party once in a while!” While I completely agree with this person's comment regarding the blog entry, I have to say I'm deeply entrenched in my very own private pity party. So much so that I'm singing, “It's my party and I'll cry if I want to, cry if I want to!” through my tears. And, that's exactly how I feel damn it!

Since being diagnosed with Fibromyalgia, scratch that, preceding the diagnosis, I could feel my pain and fatigue levels progressively getting worse. Sure, I get moments of relief from the pain where I think, “Could this be the break I've been praying for? The remission I've been promised?” only to find out not long after,  it's not. I felt that way this morning. For about an hour, I felt human. Imagine, feeling human for an hour – no pain, no fatigue! And, to have it suddenly taken away from you AGAIN.

I've lost friends who no longer take the time to call me, text me, or ask me how I'm doing because (I assume) they honestly do not want to hear the answer.  Rarely if someone does ask, I quite frankly flat out lie and say, “I'm fine.” It's easier and spares us both of the long, uncomfortable silence. If I'm honest about how I'm really feeling, they find an excuse to break off the conversation or out of kindness to them, I break it off myself. Why bother when it's easier to lie? Sometimes I tell them the truth in an email.  A lot of times I never get a response, not even from my “dearest” of friends. I need to stop doing that for clearly I'm setting myself up for disappointment. I find it tiring telling people how much pain I'm in or how fatigued I am and I assume they find it just as tiring hearing about it.  Understandably, friends get tired of asking if I can or want to do something with them because more often than not, I can't. In their defense, I rarely answer my phone anymore because I find listening hurts. Whatever it is – the frequency over the telephone lines – I don't know, talking on the phone is painful (to me).

Today, I planned to clean my house. Typically, on high pain days (most days) I can't clean my house and rely on my family to do a lot of the household chores for me. However, they don't tackle the jobs and deep clean the way I do or did when I was able too. I asked my husband if we could get help. He said, “No, we couldn't afford it without making sacrifices. Your medications cost too much. We could cancel TV.” Sacrifices, eh? What more should I sacrifice, I ask myself? My health has been sacrificed already and I didn't ask for this. No one does. Granted the sacrifices are different – apples to oranges – if you will. I shouldn't compare my physical sacrifices to household budget sacrifices.

Fibromyalgia is commonly referred to as an invisible illness because those afflicted by it don't look sick. I ask you to compare these two pictures taken almost four years apart and tell me what you see.

July 2008

February 2012

A few months ago, I started reading Toni Bernard's book, How To Be Sick: A Buddhist Inspired Guide for the Chronically Ill and their Caregivers. Unfortunately, I put it down without finishing it.  I saved a passage from her book or her Facebook page, I'm not sure, that resonated with me the last time I felt this way. She wrote:

"Self-pity can be so painful. The good thing is that, like all thoughts and emotions, it won't stay in your mind forever. It will arise and it will pass. When it's present, I recommend just being mindful of it and treating yourself kindly about it -- with self-compassion -- even speaking to yourself with phrases such as, "it's so hard to feel this way." Try not to feed it with stories about your life -- the list of injustices, etc. because that will just make it stronger. The idea is to hold it in your awareness without aversion until it passes. If speaking to yourself kindly makes you cry, that's okay because these are just tears of love for yourself. It's hard not to feel that sense of injustice, but life happens to everyone in a different way. We all have our joys and our sorrows, and the only possibility for peace is to be able to greet all of life's experiences with an open . I know there are joys to come for you. I just know. So, try to accept the sorrow you're feeling right now and know that it will pass."

So, yes, I'm throwing myself a pity party without guilt or worrying about having to justify my emotions to anyone; however, I do need to refocus my thoughts and try to let go of the injustices and limitations caused by this chronic pain illness and recognize my sadness for what it is ~ a human emotion. But, let me ask you this, my non-fibro family and friends, wouldn't you cry, too, if this happened to you?

Truly,

Britta