Fibronaut At Home


It’s been a year since I went to work.  I want to say it all started then, with a pain in my right knee, but I know now how untrue that statement is.  I’ve had arthritic like pain, fatigue and depression since I was in high school.  I had learned to live with all these things, thinking they were normal, that everyone felt that tired, had the same aches and pains.  I just whined a lot more than anyone else.  Severe depression began in August of 2010 and really came out of nowhere.  Muscle spasms began shortly after, starting in my eyes and my abdomen.  Then came the pain and fatigue that made it impossible to work.  I tried taking up knitting until the pain moved from my lower body into my arms.  I was sensitive to the lightest touch and sex was impossible.  I went to my OB-GYN, who I’d been seeing for 11 years.  He insinuated that I didn’t really want to have sex, that my husband was abusive and then proceeded to call me crazy (ha ha, nervous laugh after he saw that I wasn’t laughing).  I couldn’t read the books I loved because holding them was too difficult.  Not only did I have pain in my hands, I couldn’t hold them still.  I had muscle spasms all the time.  Falling asleep and staying asleep became a once a month event.  The pain in my jaw made eating difficult and even holding a fork seemed like too much pain and too much work.  The pain in my face was unbearable.  It felt like someone was sticking me with tiny needles.  I even had muscle spasms that had me doing the Elvis lip and a bunny nose uncontrollably.

I tried medication after medication for pain, not yet diagnosed with anything, I kept telling my doctor’s that I wanted to be pain free.  Unfortunately, for anyone who is diagnosed with fibromyalgia, the only way to diagnose is to rule out everything else.  The first torture was an EMG.  They use little electric pulses on all your nerves in one arm and leg.  Then they stick needles into you.  Enough said.  I went through so many MRI’s, some of them painful because of the position the technician put me in.  I was too stupid to complain, sobbing at the end of one of my hand MRI’s and ended up not doing the other one.  I endured a spinal tap, that was supposed to be pain-free, but hurt so bad, even my neurologist, who used the smallest needle possible and had been doing them for over 20 years was surprised at my reaction.  I was sent to physical therapy for my knees and snapped when the physical therapist suggested that my symptoms sounded like fibromyalgia.  I couldn’t even do the exercises and stretches that he asked me to do.  They were too painful and they made me feel worse.  Then came the headaches.  I was in the emergency room twice, vomiting uncontrollably from the pain.  I even went to my primary care physicians office and although he wasn’t available, thought another doctor would be able to help me.  She said very distinctly “I cannot give you any more narcotics”.  That wasn’t what I asked for.  I just wanted to feel better, to be rid of the debilitating headache.  My neurologist finally determined that muscle spasms in my neck were causing the headaches and put me on a muscle relaxer, Baclofen.  The combination of Lyrica and Cymbalta was supposed to take care of the  pain, the depression and the fatigue.  Not even close.  The Lyrica combined with my inability so far to commit to an exercise program has caused me to gain 40 pounds in 9 months.  Almost like being pregnant, without the reward of a cute little baby to cuddle and without any idea when the weight gain will stop.  I’m afraid to go off the Lyrica because it does help with the uncontrollable muscle movements but switched the Cymbalta for Amitryptaline and Fluoxetine to save money.  I sleep better now, but still feel unrested even if I do get 8 hours.

I’m reading “Pain Tracking: Your Personal Guide to Living Well with Chronic Pain” by Deborah Barrett in the hopes that I can someday lead a normal life.  Thanks to Mary Jane at Northern Plains Public Library for finding and recommending the book to me.  I’m trying to get off of the narcotics, even though I’m probably experiencing more pain because of it.  I get to stay at home with my two-year-old and pick up my eight-year-old and my ten-year-old from  school.  I’m actually driving, which I had given up do to the pain and the fog I was in from all the medications.  I’m taking up sewing, even though using my hands and arms that much causes more pain than if I just played on the computer all day.  There comes a point where you just can’t sit, accomplishing nothing, having nothing to show for yourself.  The sense of self-worth that working used to give me has to be filled with something else.  I love my kids and my hubby and they are great but I feel like I need to do more than just be a wife and mother.  Which IS crazy!  I can’t even keep up with the housework and I want to do more.  Once upon a time, I was up with the birdies and out the door for eight hours of running around like a chicken with my head cut off with only an hour break in between.  Now I’m lucky if I’m out of bed at my old lunchtime.  I used to read a new book every couple days (romance and erotica, no deep thinking allowed) but now I’m lucky if I can concentrate enough to finish a novel a week.  I’m easily distracted and if I do have a conversation with someone other than my children, I find myself rambling.  I have to make notes before I go to the doctor, not only to be sure that I get my half hour that I’m paying for, but also so I don’t forget anything.  It is now 4 in the afternoon and I still haven’t showered (ew, right?) but Emma is asleep so after I let the dog back in, I’m going to give it a shot.  You might think I’m joking but seriously, I have to schedule a shower or else I don’t have the time or the energy for one.  It has less to do with my two-year-old and more to do with the fact that on my way to shower fifteen different things will distract me and then I’ll actually get the door locked and I’ll remember that I didn’t bring a towel and I forgot to grab some clean clothes.  The only reason I remember to take my medication is the pain.  My priorities have changed so much in the last year, that I’m still not sure what they are.  My family is definitely first and going back to work isn’t even on my radar.  How can I commit to anything when every day is a new lesson in humility and limits of my body and my mind.  Hopefully by next year I’ll have a better handle on me and my fibromyalgia.

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Another day of defeat

It is noon and I’m still in my pajamas.  Which, when I think about it, isn’t that bad, considering I didn’t wake up until 9:45.  I’ve got my arms propped up by pillows because holding them up to type is more than I can handle right now.  There are two baskets of folded clothes next to the couch.  Yay for me folding clothes, two days ago.  With 3 kids and one hubby, it is already time to wash clothes again.  My little Emma has already dumped the kitty’s food into their water, found a black vis-a-vis marker and decorated her face, arms and legs and been up on the bathroom counter, trying to cut her own fingernails.  My kitchen is a mess, which should be impossible.  I have a dishwasher and I have an automatic floor cleaner after all, but I also have the 3 kids and one hubby.  Now, Emma is grabbing my face, forcing me to look at her and telling me “I hungry Mama!” but now she’s looking at DVD’s, so I might have five more minutes before I have to get up.  I take my pain meds when I wake up, so you’d think I’d be feeling pretty good right now.  My knees hurt.  My hips hurt.  I’m PMSing so my lower belly hurts.  I’ve been typing for 15 minutes so now my shoulders, elbows, fingers and everything in between hurts.  Sharp pains, aching pains.  Emma says “you hurt Mommy?” because I can’t keep the grimace off my face.  Ha!  It just occurred to me that McDonald’s Grimace is purple and that’s the color for Fibromyalgia Awareness.  Perfect!  Something has spooked Emma and now she is straddling me, patting my back.  Katie had a party today to celebrate the end of their two weeks of swimming lessons at school, but it was at 10:15 and that is too early for me.  Her volleyball game is at 9 am in Kersey tomorrow.  We have to leave at 8 am just to be there in time.  Which is one more thing I’m probably going to miss out on.  I’ve been thinking about getting in the shower for the last hour.  Every time I go to actually get in, I’m distracted by the mess of my house and I forget to look for the weather report.  I finally know that it is supposed to be beautiful and 77 degrees today but I’m unable to get excited about it.  I’ve already missed so much of the day.  I can’t reclaim those seconds, minutes or hours.  They are gone, wasted.  This is what Fibromyalgia does to you.  Takes away your will to live.  Second my second.  Every second you hurt and lay there thinking you’ll get up and do something as soon as you feel better and suddenly it’s time to take your meds again and you realize that the moment you’re waiting for isn’t coming.  There is no escape from the pain.  There is no cure.  What am I supposed to do with that?  I have to get in the shower because I have to pick up my kids from school, but come this summer, what is going to get me off the couch?

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Pain is a real pain in the you know what!

I’m not sure I’m ready to write about my pain yet.  Even when I sound or look like I feel well, I’m feeling some sort of pain.  I am asked how I’m feeling and I’m torn.  I don’t want to lie and say I feel fine when I don’t but I get tired of being the object of pity.  Debbie Downer has nothing on me.  If I do say I’m feeling fine, I always end up going into more detail because I’m always asked if I’m getting better.  I have to accept that there is no cure for Fibromyalgia and part of that acceptance for me is helping others to understand that there is no cure.  I will always have pain.  At the same time, I don’t feel like anyone can truly understand what it is like to wake up every morning, knowing that you are going to have some sort of pain that day with no idea why that particular part of your body is hurting.  In my case, I’m usually in pain before I wake up in the morning and that is what wakes me up and alerts me that I need to take my medication.  The only thing that changes is where that pain is.  Sometimes I say there are good days and bad days.  The reality is, there are good moments and there are bad days.  On a normal day I can be feeling fine one second and the next I’m looking for a place to sit down.  On a bad day, I feel like I have the flu.  I’m fatigued, most of my joints hurt and my entire body aches.

I’m sensitive about this subject especially because before I was even diagnosed with Fibromyalgia, having only been on my pain meds for a couple months, I was accused of being an addict.  I cannot tell you how much that hurt or how angry that made me.  Here I was, struggling with depression, my life in tatters due to this mystery illness, and someone I hadn’t even seen in person since the illness hit me was telling people that I was addicted to my pain meds.  I was getting no high from these drugs, they weren’t even fully relieving the pain that I was experiencing and that is why I am not an addict.  This has stuck with me so much that I’m in the process of working with my doctor to wean myself off the narcotics even though my pain has gotten worse since we’ve begun this process!  I don’t want to go back to where I was last year where my pain was so bad at times that I did not want to live, but I want to be off all this medication.

When asked by my doctor last year, before I was even diagnosed, what my goal was, I said I wanted to be pain-free.  I’m now having to cope with the fact that I will never be pain-free.  Where does that leave me?   My doctor told me that Fibromyalgics experience pain at a level 10 times worse than a normal person.  What does that really mean?  My daughter can’t lay her head on my shoulder.  The pressure from my kitty stepping on me causes me to jump.  A couple pieces of beef jerky and I couldn’t chew on one side of my mouth for a week.  My husband pulled me in for a hug, barely touching me with his fingertips and it felt like he was digging them into my sides.  I can’t wear high heels anymore, and any kind of walking makes my feet hurt.  I could go on and on.

I always try to finish on a positive note but I got nothin’ on this one.



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