My Beautiful Messy Life

by | Dec 8, 2015 | ME/CFS, Patient Education, Patient Voice

InspirationSignAt the Bateman Horne Center, empowering patients to find their strongest voice and live their best life is the first and most important component of our mission. We strive to strengthen community and share the beauty of the human spirit that lives within all impacted by ME/CFS and Fibromylagia. With that in mind, we want to build a special place online for members of our community to share their stories. Our goal is to highlight the strength, joy, humor and beauty that can be found in a life changed by ME/CFS and Fibromyalgia.

Enjoy the first of what we hope will be many submissions:

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My Beautiful Messy Life

-A Serious and Humorous Journey with CFS by Jo Ivie

High school class president, on the honor roll, played three instruments, volunteered and had the whole world ahead of me …until 1993 when my world came to a screeching halt, struck by a fatigue nightmare. It felt as if cement slabs were stacked on top of me and no amount of sleep helped. I was terrified along with my family. Bedridden for years, I cried, went to doctors that told me I was just depressed (because all of my tests came out normal and they didn’t have another answer) and then cried some more.

 

Three words…Chronic Fatigue Syndrome. Finally getting a name, a diagnosis for the prison I suffered in was so freeing, as if for a moment the doors had opened and I had been released. I was beyond grateful to finally feel validated, to know I wasn’t crazy and that my pain and suffering were not “all in my head”. Living for ten years wondering what was wrong with me, why couldn’t the doctors figure this out, why couldn’t I overcome this “depression” they had diagnosed me with? Yes, I became depressed and who wouldn’t, when it seems your body has shut down and you can barely lift your head from the pillow, for weeks and then years as everyone else’s lives go on, but yours remains frozen in time, stuck in 1993. The weight of that emotional/mental dungeon of not knowing and not being believed by doctors who are supposed to fix and make you better, was as heavy as those cement slabs.

In college it seemed that every step forward (literally and figuratively) was thirty steps back. Sometimes one class at a time, it took me nine years to become a Registered Nurse.

Oh the cruel irony of a Type A, creative perfectionist having a chronic disabling disease!

Every day is a battle with my mind, body, and spirit.

I often gaze out the window…wishing I was on the other side of the glass as neighbors jog by or help their kids ride a bike. The seasons change but my life doesn’t seem to. I feel like I’m in the “Groundhog Day” movie: wake up, give myself a pep talk to move (because my joints are like the tin-man), take pills, weigh the pros/cons of taking a shower, hurry because as each hour ticks by my fatigue worsens. Eat, have anxiety because I had so many plans for the day and now need to lay down because of my low blood pressure, watch TV, change positions due to the knots in my neck, browse Pinterest, wish my daughter was home to make lunch, take more pills and back to the couch again. Ignore phone calls because of the brain fog, feel fearful noticing yet another new weird symptom, bribe myself with chocolate to do some laundry then get depressed because I got nothing done. The 5:00 news signals that my husband will be home soon. I tell him I “had another one of those days” as he makes dinner. We watch Netflix together, I take more pills, dread getting ready for bed because that involves climbing the stairs and standing at the sink, lay my achy-breaky body down in bed and dream of what I will do if I have energy tomorrow. Repeat–wake up, give myself a pep talk…

The majority of my social activities are going to doctor’s appointments and talking to the kind pharmacy employees. Should I wear makeup and earrings when I leave the house so that the doctor will respect me, or go as-is to match how I look with how I feel so they’ll believe me? I do have a bit of pride left. Then my neighbors see me with makeup on and say, “You look great, you must be feeling better?” Ugh! It’s kind of like when they ask me how I am. I pause, um…as my brain plays ping pong with the options of telling them the truth or lying and saying my usual “I’m fine”.

One of the mottos I live by is “You can laugh or you can cry.”

Here is a list of things that drive me crazy but later I laugh about:

  • When the new pharmacy technician says to me, “Have you filled here before?”
  • When people say, “Have you ever tried…?” (Fill in the blank) It’s usually some herbal supplement/vitamin that they just happened to be selling at the moment! They go on arguing that “It’s safe because it’s totally natural,” to which I want to say, “So is uranium!” I run the other way resembling the figure in Van Gogh’s Scream painting.
  • The fact that my phone contacts under the letter D goes on forever because I’ve listed all of my specialist’s names starting with “Dr”… including my Cardiologist, ENT, Oral Surgeon, Cardiac Electro-Physiologist, Gastroenterologist, OB/GYN, Dermatologist, Podiatrist, Allergist, Ophthalmologist, Physiatrist and Endocrinologist! (You think I’m kidding huh?) But the first doctor listed is my favorite… Dr. Bateman!
  • When I’m in a fog and have trouble recalling words or names. Who needs to buy those name brand Hasbro games when you live with me? Word Search takes on a whole new meaning. Conversations quickly turn into 20 questions as my family tries to guess what I meant by “Can you go and get that thingy“. Other times it’s like playing Balderdash or Sniglets where I have my own fibro-language, we call them Jo-isms. There’s times I get most of the word correct but reverse the letters like when I told my husband as we were going to bed “Good-hite nunny!” If all else fails there’s always Pictionary and charades  to help explain what I’m thinking.
  • Sometimes I’m the one playing 20 questions as I try and figure out why I’m in a flare. Could it be that I overdid it yesterday or the day before, did I eat something that I have an unknown allergy to, was I around a scent that I’m reacting to, am I overheated or too cold, did I not go into the deepest sleep stage the night before,  is my blood pressure too low, am I extra stressed or worried about something, has the barometric pressure changed, or did Elvis wear a red tie on this day 42 years ago? After a headache and mushy brain I conclude that I have no idea why and I’d better stop trying to figure it out because I’m inducing another flare. Because I don’t like leaving questions unanswered, I tell myself it’s probably because a little bird just pooped on my roof! The end.
  • The look on nurse’s faces when they ask me if I’m on any medication and I unroll the mile long scroll.
  • When my depth perception is off or spatial awareness is unaware and I run into the door frame or the corner of the wall. (Following the bump sound I’m known to say, “That’ll leave a mark,” and it always does!)
  • When the doctor comes in with a paper in his hand and says, “Good news, you’re tests all came back normal.” Many times I have prayed that they would come back abnormal so there would be something concrete that they could treat instead of the invisible misleading she’s fine assumption. Last year when I had an abnormal test result I did the happy dance and called my husband and said, “Guess what??? My test results were NOT normal!” and I hear the excitement in his voice as he says, “Yay!!” I also took a box of doughnuts to my doctor’s office at the next appointment. She got it 🙂
  • When people say, I know how you feel, I get really tired when I’m pregnant. I want to tell them how grateful they should be because at least it didn’t last longer than 9 months and they got a baby out of it! I just got horrid cramps from endometriosis and a hysterectomy out of my 22 year fatigue!
  • When talking to someone and they say they’re tired because they went on an eight mile hike and I’m too embarrassed to say I’m tired too because I got up and refilled the soap dispenser!
  • When my paper medical file at my primary care doc  is so thick that it doesn’t fit in the vertical cubby spaces so they just put a note in there and then I get skipped over.
  • When a friend calls to ask me to lunch and I have to check the weather forecast and guess what the barometric pressure will be at that time. But I shouldn’t trust the weatherman, I can predict a storm way before it’s even on his radar!
  • When I watch so much TV that the characters and personalities feel like friends down the road. Or when I can have my eyes closed while my husband channel surfs and I can tell which channel he’s on from the voices or when I can recite all of the side effects listed at the end of the prescription drug commercials. (That might also be due to the fact that I’m on a lot of those meds myself!)
  • When the Rite Aid Pharmacy robot lady calls and leaves a message to tell me that my “prescription is ready for pick up, thank you, (and then with a lilt in her voice) good-byeee.” To be honest, I kind of  like her. My family and I giggle when she calls because we all impersonate her and I hear from her more than anyone 🙂
  • When a nurse asks me which pharmacy I’d like a prescription called into and I not only tell her the name, address and phone number but also which number to push to skip the recording and get straight through to the pharmacist, either Danny or Sheb! (It’s #3 by the way.)
  • When I’m at Rite Aid and two people are next to me asking each other where the cough drops would be? I immediately tell them to go to the 3rd aisle from the back of the store, top of the shelf nearest the north wall and they’ll be in between the laxatives and the Dramamine. (Remember my social life, I’m there a lot. You know you spend a little too much time there when the pharmacy staff hand signs a Christmas card for you! I call them my extended family.)

Leaving the house involves more planning than the Secret Service’s job of scoping out a town before the president travels to it. It starts with getting dressed…what can I wear that can be adjusted for BOTH cold and hot circumstances. Sandals or socks always gets me-how about socks with sandals-NO!  I always take my purse and a basket for the car (it’s like an adult diaper bag for the chronically ill). In it is:

  • Eye drops, chapstick and mints for that pesky Sjogren’s Syndrome.
  • A Gatorade for salt and Diet Cherry Pepsi for liquid stamina.
  • A protein bar for when my blood sugar drops and chocolate for when I’m flustered, depressed, happy or stressed.
  • A list of all of my medications, allergies and medical history (my long scroll) just in case I get in an accident and the ER staff foolishly thinks, “She’s young, she looks normal, she probably doesn’t have any major medical concerns?” (By the way I don’t know if looking “normal” is a blessing or a curse, but that’s another story.)
  • Afternoon pills, check. Alarm set on the phone to remind me to take the pills.
  • My mini pharmacy consisting of two small bags. The one has over the counter remedies including an anti-diarrheal and fiber (because you never know which side the IBS pendulum will swing to). Tums, salt tablets, anti-histamine, anti-inflammatory, pain/fever reducer etc. Another bag with a 48 hour supply of all those daily drugs on the scroll. (Like the old Mastercard commercial: Gabapentin, never leave home without it!)
  • Lotion for the eczema.
  • Kleenex because you never know when the rest of the salt water from your nasal rinse will drip out!
  • Hand sanitizer (because I seem to always catch what’s going around, but with double the recovery time).
  • A cute hat for the bed-head hair in case I have to take a break and lay down in my car, elevate my feet and return my blood pressure to homeostasis.
  • A fan/mister filled with ice water in an insulated lunch bag in case my heat intolerance boils over and I get nauseated and lightheaded.
  • My grocery list on my iPhone and handwritten because the forecast is always “with the chance of brain fog”.
  • I take a second purse which is smaller and lighter for my phone and wallet because I carry SO much stuff in my normal purse that my left shoulder freezes and I’m in a lot of pain way before I get to the checkout line (it actually starts when I enter the store from the parking lot).
  • A pair of earplugs for external stimuli overload like at a movie or play.
  • My store receipts needed for returning all those items I previously bought in an altered state: while my brain was foggy and re-booting with a failed attempt alert, my OCD was spinning, my blood sugar and blood pressure dropping and both shoulders were frozen–by then my body is sounding a panic alarm, adrenaline surging through my vessels and my brain is shouting, “I don’t care what’s in the basket, just buy it and get out of  here!” My first clue should have been when I stood  in the ketchup aisle for 20 minutes on the verge of tears because I couldn’t decide which brand was the better deal!
  • Oh yes, and an extra jacket.

EmpowerWordBubbleMost people shoot for the stars, I just shoot for normal–whatever that is? When you lose your health, your old life and dreams die and you must create what your new life looks like and is. I’ve learned that the grief cycle is never really over, it cycles too. I think we all go through years of using all of our energy to fight against the disease, ironically that just feeds the monster. Then you wait, wait for a cure, put your life and happiness on hold. It’s ok to dream of a life cured but don’t base your other dreams on this one alone. The saying is, you’ve only got one life! For me the most powerful way of dealing with the disease was acceptance. Through acceptance you stop using so much mental and emotional energy on the fight, on going to any doctor, person or website that claims they have a cure for that. Acceptance is like finally taking a long deep breath as the weight of those chains drop to the floor. You have new found energy that you can use on recreating your new life. It’s terribly lonely and sad to go through this but you will find beauty and happiness again. It may not come from your first choice like travel or a big family, it may not come from your 208th choice but you’ll find it if you search. I find beauty and happiness in small and simple things like watching the finches and hummingbirds scurry around outside my window, flowers, music, having my dog snuggled beside me,  laughing with my friends and family, gentle hugs, talking on the phone with my mom and yes even a rerun of my favorite Matlock or Downton Abbey episode. Even on those “out of order days” I do something that makes me happy (it often includes eating chocolate–you don’t need a lot of energy for that!)

When I was at the sickest point of my illness I remember feeling completely broken in every way. I wondered, is this really the life I was meant to have? Where’s the value of  me laying in bed year after year staring at the same ceiling? Since my childhood my self esteem had always been based on my accomplishments, my titles: I was an honor student, I was a nurse, I was a pianist. Later I wanted to be an ideal wife and a Super-Mom. CFS has crippled my abilities to fulfill those titles, leaving me with only a drop of self worth. But then I had a beautiful experience through the grace of God. He had been having that conversation with me and spoke the answer to my heart that even if I laid in that bed the rest of my life, I was of infinite worth because I was His daughter and His love is not based on titles!

CFS stole so many dreams from me. Life had to be adjusted to fit into its tight limits. I had to parent from the couch and bed instead of from the sidelines or in the audience, but I could still be a good mom. I had to hang up my scrubs, no longer being able to work as a nurse after I had worked so hard to get that degree, but I can still study for enjoyment and to keep my license or help neighbors who have a medical question. (Not to mention cute scrubs make cute pajamas for when my set of yoga pants are in the wash!) I may never be considered an honor student again, but when I don’t have brain fog I do have bursts of enlightenment and quick humor. My back and fingers ache when I play the piano but I can still enjoy creating the music, just for shorter periods of time. Sometimes I feel more like a burden than a wife but I am my husband’s cheerleader and he is mine. I’m so blessed to be married to him, I love him and he loves me!

Thankfully CFS did not steal my amazing support group of loving family, friends and God. It did not steal the person I have become and the things I’ve learned not despite of, but because of the struggle. It did not steal my spirit!

I am chronically ill and I am chronically STRONG!!

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By Leigh

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