Tuesday, March 20, 2012

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.


Between all of the negative, I tried to live as normal a life as possible. I read a lot of books, they have always been my escape from reality. I babysat to get out of the house and the money was nice. We came from nothing and were taught to work hard for anything we wanted. We certainly weren’t handed money. Ever. There wasn’t any to give us. My dad was strict so we never got into trouble. When I left home at age 20, my curfew was still midnight during the week and 1am on weekends- if I was even allowed to go anywhere. My dad did a good job with us girls. And although I resented him for allowing my step-mother to treat us the way that she did, I know he always did what was best for us. I love him.

So yes, at 16, when I got that driver’s license, I thought I had so much to look forward to! A month to the day from the day I got that license, I was driving the new (old) used car my mom had bought for me (probably out of guilt for leaving) to babysit when I was struck in the driver-side door by some older lady who claimed she hadn’t even seen me. All I had wanted to do was stop buy a birthday card for my uncle (whom I was babysitting for that night so he and my aunt could go celebrate) instead of driving straight
to their house like my dad had advised. My car was totaled, I was in shock and devastated. That was the first of the 9 total car accidents I have been in. None were my fault and for the longest time I felt like a moving bullseye. To this day, I prefer to drive at night (less people on the road) and I try to use the roads less traveled (decreasing my chance of being around the number of people who may hit me- or so I’ve rationalized) and I really try not to drive somewhere unless I absolutely have to or want to. I especially
do not drive out of my office for lunch because of the chaos on the roads during peak hours. I calculate and prepare my drive carefully before each time I walk out of the house.

And so we come to the reason I was diagnosed with my Fibromyalgia. Between age 16 and 24, those 9 accidents occurred. I have been lucky, I tell myself, the accidents could have been much worse. Most were rear-enders, some causing thousands in damage to my cars, often resulting in severe whiplash, stiffness, pain and once even ramming my knee into the dash, causing it to swell with fluid, needing it injected with steroids and the fluid removed from behind the knee-cap. I have had my share of physical therapy. I have a slight curvature in my spine so the injuries were more affective to me than someone with
a normal spine.

At 24, the injuries on top of the existing injuries had piled up and my muscles weren’t working the way they normally should. The pain became so frustrating I finally had a doctor who diagnosed me with Fibromyalgia onset from the numerous car accidents. I went to nursing school, I knew the medical repercussions. I was angry, sad, depressed, scared, frustrated that at such a young age, I should feel healthy and energetic and not have to be dealing with this. I became determined to strive with every ounce of strength I could muster- to live as normal a life as possible. I chose to keep my disease and illnesses
to myself because I just wanted to be normal. I would only disclose all of this to anyone I let get remotely close to me. I mean, who wants to hang out with a girl who is sick all of the time?

With Fibromyalgia, my already existing headaches grew into chronic migraines, and the added diagnoses of insomnia and generalized anxiety disorder. I have noticed over the past few years that my symptoms have progressively worsened. I’ve reached a breaking point and this is why I write this today. I need for you to know how I feel and why I am who I am and why I behave in the ways that I do. I need for you to acknowledge and accept that this is me and this is what I deal with.

My body aches all over, muscles aching as if I have the flu. It hurts to breathe. It hurts to brush up against something, as if my whole body is bruised. I’m so fatigued and lethargic, it hurts to wake up in the morning- after a restless night of uncomfortable tossing and turning. My body is stiff and in pain and it hurts to exist. It takes all of the strength I can muster just to get out of the bed each morning. All of these things do not make me a morning person. I move very slowly, it takes me longer to get ready. Sometimes I don’t even feel the energy to talk. I often shake. It hurts to exert the energy to hold my head up. I have bouts of hot and cold spells throughout each day. I have poor circulation. In the last few weeks I have noticed these electrical-like impulses in two places in the muscles of my lower left leg. It’s hard to focus and concentrate and sometimes my memory isn’t up to speed. Some days the headaches become full-blown migraines as the day progresses. Sometimes I wake up with a migraine. Like I said, it hurts for me to exist.

These physical issues have always been mentally trying on me. But lately, with the severity of the condition worsening, I’m completely emotionally drained and distraught. I’m extremely frustrated, sad, depressed, angry, scared, discouraged, feel hopeless and helpless. I’m scared of how I’m feeling both physically and mentally. Let me also tell you that I haven’t just sat around waiting to see where my diagnosis would lead over these last ten years. I feel that I have truly tried everything. I have tried to exercise, eat better, diet changes, medications, take vitamins, take supplements, herbs, yoga, acupuncture and I see my chiropractor for adjustments and massage therapy every other week. It isn’t cheap being sick either- but we’ll leave that for the “medical field” blog I still intend to get to one of these days.

Simply put, when you feel like shit, it is very difficult to be consistent in a lot of these areas. Living with this disease consists of expending all of my energy working hard to retain the job that I am very lucky to have. I left the medical field for many reasons but one major reason was the stress levels on my body and well-being. I am so happy to have a job (while it is still stressful in different ways) that at this point in my life I am able to get there on time, do the work and perform better than some of my peers, am still able to
support myself financially and have good health insurance. I have seriously pondered the inability to work and the result of disability. But the true person I am deep inside is not a quitter. I’m a fighter and I know I have a deep inner strength that I am lucky to possess. But I will tell you it is damn hard to exist each day when you feel like you are going to die. That is how bad this is for me.

I recognize that this will be a struggle for the rest of my life. Recognizing that is also frustrating, especially when you know there isn’t really a cure or at least I haven’t found anything that makes me feel better or improve the quality of my life. I am continuing to seek out those things and will keep doing so. It’s a process of trial and error. Some things work for some people and some things do not.

I wanted you all to know these things for many reasons. Not because I want you to feel bad for me or for pity. I want you to know because it is a part of who I am. It always will be. I recognize that part of dealing with the pain is acknowledging and letting you know how I feel is having your acknowledgement and understanding. As my friend, co-worker, acquaintance, peer, classmate, whatever or whoever you are to me, I need you to know. I do need your help in getting through this. I need you to know why it might be that I don’t have the energy to pick up the phone and converse, or respond to an email, or meet up for
coffee or lunch, or to go out to dinner, or to go out dancing. It saddens me that I can’t do all of these things. But please don’t stop inviting me or encouraging me. And although I have isolated myself for many reasons, I do need your love and support right now, more than ever.

When you do see me out and catch a glimpse of sadness or admiration in my eyes, please remember what I am dealing with. It is very hard to be around people who don’t feel how I feel. I’m doing the best that I can with what I’ve got and that’s all I can do. Right now a physician has prescribed Lyrica for me. I took one pill and it made me feel really weird. I’m hypersensitive to everything. I’m not so sure that medications are the right treatment for me but you get to the point where you will try anything to make the
pain go away.

Sometimes I feel like this is driving me crazy. I would never kill myself- I would never want to hurt those who love me or hurt myself. I have a very strong fear of death and dying. But let me assure you that a human being cannot feel constant long-term pain and not have this thought cross their mind- that you just wish the pain would stop. You all know of my firm belief in that everything happens for a reason. I continue to hold onto that ever-so-slowly-dwindling amount of faith that I will figure this out (with help of
all of those around me) and that I will beat this shit. And I will use every experience in my life to somehow benefit others and provide the positive support that I get from you all. That is why I am here. And I am grateful to be here- no matter how much it hurts.

Much love!
Kelly Slevin

~pay it forward.



It only takes moments to comment but makes a world of difference to an author to know they are not alone.  Thank you.  ~  Britta

7 comments:

  1. I do feel bad for you Kelly. I have it too and know of some of what you are going thru. I am on Lyrica 75 mgm 3x's a day and it helps me a lot. I also moved from the cold midwest to AZ and have less pain. Tylenol has been the choice of pain med but the pain has progressed and am now taking hydorcodone 500 once a day in the afternoon to get thru the evening. I also have Sjogrens, which is not the top priority. Lupus is in question but tests are negative for Discoid and SLE. Positive for Cardiolipin. See a Rheumatologist on the 27th. I can relate on so many issues. I do feel it can come from stress related trauma's in one's life. You certainly did have trauma in your growing up years. I had mine during my marriage and the accidental lose of my husband, being pregnant when he was killed and raising 4 boys, with 9 the oldest, one 6, one 3 and one unborn. Trauma and stress could be major symptoms of onset. I am now retired and do what I can or want to do and what I do, I get pay backs. I am able to rest and take it easy. I do wish you to feel better. I know it will never go away but just to feel better can be a goal. Thank you for sharing and thank you for posting Britta. Harriet

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  2. Kelly, I can relate to much of your story and so know the strength that it has taken for you to come this far. We are all so incredibly strong to live with this pain day in/day out--not to mention surviving the childhood stuff that has contributed to the pain in a lot of ways. I have no doubt that you will continue to pay it forward. :)

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  3. Hi Kelly,

    I am touched by your honesty in this posting.

    And, on every front I can relate. You are not alone. There are so many of us who have this. We all fight this dragon- together. Don't lose hope or give up.

    I started blogging to get stuff off of my chest and reach out to others (which isn't something I am very good at, being an introvert). For me, having fibromyalgia and chronic myofascial pain for nearly 20 years has changed absolutely everything. My whole perspective on quality of life has changed. It took years to accept this is what I have and that I can no longer fight against my "new normal"- I am how I am and am figuring out how to do and what to do along the way.

    Check out my blog, and please keep in touch. I am thinking of you. Know there are many people who can relate....

    -Jazz, the FibroFascialGal
    http://fightinthefibro.blogspot.ca/

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  4. I finally figured out how to comment! Thank you all for the comments and support. I wrote this in June of 2009 and I was encouraged to share in hopes that people would indeed relate, feel like they aren't alone and encourage eachother to hang in here. Keep fighting. Keep loving and nurturing the body and mind we were given- even if it may be broken. Thank you, Britta, for posting. I am grateful to have made this connection and share. <3

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    Replies
    1. Kelly, thank your for sharing this. The pain you suffer is exactly like having Lupus....That was such a good read, and Iadmire yur strength to keep going.....hopefully this will rubb off on me. You have certainly had a journey in life, but like you, I believe all happens for a reason.

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  5. Britta thanks for posting everyone's stories as it's great to see other real people with fibro and chronic pain

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  6. Hi Kelly, I would first like to let you know that this is my first time reading your blog, and I am so very thankful that I have found you. Your words, thoughts and feelings have touched my heart and have also inspired me to open up and share my world with the people in my life. For the most part, I feel as though I have been suffering in silence, this has been going on for years and years. Lately, I am in a very bad place, mentally and physically. I feel broken, beaten and as if I do not exist anymore.

    Finding your blog was just what I needed, and I am sincerely thankful to you for writing it. I will be following along and looking forward to reading about your journey.

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