I’m not living. I’m just surviving. by Jean Marie Keenan-Johnston

These were words I read on a post on my home page, one of many posts I saw today among the different group pages to which I belong for chronic pain, cancer or various autoimmune disorders.  The strange thing is throughout the day I was trying to think about what I could blog about, and the thought that kept coming to mind was “Where do I get my strength?”  I asked myself this today especially because I’m feeling like I don’t have very much of it left after everything that has happened this past week.  

I started my week actually recovering from what was supposed to be my vacation.  The odds were already against me…my husband was unable to go with my girls and me because of how unwell our cat has been, worries that he would pass while we were gone and he would be in the care of somebody else, as well as a the stricter vacation budget we found ourselves dealing with after a summer of trying to manage his medical bills.  There just wasn’t extra money available this year to hire somebody to stay with our pets, so Hubby found himself staying home.  Getting into all the details of the week’s disasters while we were away  (and yes, I’m not exaggerating, there were many) would be as exhausting for you as it was for me experiencing them firsthand, so I won’t bore all of you with that.  I’ll just say this…vacationing with siblings, their children and a ton of extended family, especially when one sibling needs to leave for a few days and doesn’t want to ruin the children’s vacation experience, makes for a very difficult time for chronic pain patients because there aren’t enough opportunities to rest and recharge and there are too many opportunities to overdo it and flare.  And so once I got home, I found myself nearly bedridden for almost two days trying to recover.  I didn’t come home regretting any of it…I’ve had to push myself too hard for the sake of family many times before, and I did it because it was necessary at the time (that and I was lucky enough to be able to push myself past my usual limit).  The point of regretting came when I learned Monday night my mother had been rushed to the ER and admitted to a hospital over a half hour from my home.  Or I should say, I truly regretted it when I needed energy and strength to get through the next day, the day I spent the entire time at the hospital talking with every medical professional who entered her room, helping her ask all the necessary questions about her condition and treatment, and making sure she had all her other needs covered.  Thirteen hours later, sometime after 11 pm (because I was lucky enough to run into traffic on the Turnpike, starting at the exit right before mine of course, at that late hour) I pulled into my driveway happy to be home again and ready to resume recovering from my vacation.

That was Tuesday night.  Stress was really getting to me by that point.  My mom was doing better but there was still a lot on my mind.  My daughter starts school the day after Labor Day, and I learned the hard way last year how important it is to have a household that is neat and tidy if you want to successfully manage virtual school. Housework is one of my toughest challenges with fibromyalgia.  After my worst winter with fibromyalgia, last winter, I had hoped to have a successful summer, this summer, when I could finally do some catching up on everything I couldn’t keep up with before.  I didn’t however have as successfully productive a summer as I had hoped.  Virtual schooling, we’ve decided, is the best way to manage education given my disability and how tough it is to move around in the morning.  It’s the only way I could think of that would help us avoid becoming an attendance or truancy problem without the extra work of traditional homeschooling that I was no longer able to manage due to my health.  The stress I’m feeling right now is where the answer to one problem, virtual schooling helping me manage my children’s schooling while I’m dealing with a lot of physical restrictions, hinges so heavily on another obstacle fibromyalgia creates for me, the difficulties of trying to tackle housekeeping.  Little did I know this would not be the only issue to contend with as the week went on and I waited for my mother’s discharge.

Thursday night we had our own ER surprise visit…my younger daughter’s stomach complaints led to a call to the pediatrician on call.  Childhood appendicitis was the concern.  Constipation could have been the problem.  Just to be safe, to St. Christopher’s we went per his directions.  Just an hour before midnight I pulled into their parking lot…after driving past, losing my way among the construction signs and dividers all over the campus, and having to call to speak with hospital security when I couldn’t find any signs of the Emergency Room.  Friday morning we came home…6 a.m. Baby Girl was doing better.  Mommy?  Not so sure.

My mother was discharged later Friday.  My younger daughter continues to get better.  My oldest cat, who started to show symptoms like the other times we ended up at the animal hospital in the middle of HIS medical emergencies, looked like he was headed there again but has instead held his own quite well and is still home with us. Somehow the paycheck that looked like it would run out weeks ago has stretched far beyond I ever thought possible.  I guess in writing this I’ve come up with my own answer.  Where do I get my strength?  I still do feel like I’m more surviving right now than living, but it seems like somehow the universe is sharing with me the strength I need to get through it all.  While I feel like we’ve been thrown a LOT of curve balls, even more so lately than usual, somehow it seems we’ve done our best to catch each and every one.  Guess that’s what “just surviving” is all about…and being a survivor feels pretty darn good. 

  1. 3 Responses to “I’m not living. I’m just surviving. by Jean Marie Keenan-Johnston”

  2. Thank you for your honesty. You are a strong, amazing lady. Your life reminds me of mine, I really thought that I was the few that live with all this ‘stuff’ happening. I do not have Fibromyalgia. But I suffer nerve pain, I guess. This week I’ve been over run with keeping up with my 10 year old daughter. School orientation, walking, cheerleading practice, football games, walking, the county, Grange Fair, walking, with my arms weighted down with the winnings from the games. More walking. I like that you said you “push yourself” through the pain for you family. I finally figured that out this summer. This is the first summer I have been active. I, like you push myself through the pain. When I come home, I’m exhausted and I sit down with guilt, just a few minutes to cool down under the fan. Then my daughter says, “mom, emergency, the cat just pooped on my bed.” I pushed myself to get up. After crying, I changed the bed sheets and actually enjoyed making up her bed. I have not been able to do housework, for years, as you. I found a new Doctor, with a plan that has worked to get me onto my feet and back into life again. I like that you say the universe is giving you the strength you need, and stretching your paycheck. I will keep you and your family in my prayers. Again, thank you for sharing. You’re helping me in ways you will never know.

    By Lori Loesch on Aug 27, 2014

  3. I’m sorry I didn’t reply until now. I have been having problems finding extra time while adjusting to the new school year and helping my mom since her hospital discharge. I really appreciate your kind words and I’m so happy to hear that you’ve found a doctor who will help you get more of your life back! I’m trying (when time allows) to do my own research rather than relying completely on doctors…alternative medicine can be so expensive without the benefit of having health insurance help foot the bill. Not to sound too “new age” but if it’s going to offer the possibility of helping – crystals, aromatherapy, healing foods, herbs, essential oils – I’m eager to look into it and possibly try it. So far I’ve started making my own lavender essential oil and skullcap tincture, but they’re not ready yet. Thank you for your continued inspiring thoughts and prayers. Please keep me posted on how you’re doing with the new doctor’s treatment plan! Good luck!

    By jean on Sep 21, 2014

  4. Good blog post. I certainly appreciate this website.

    Stick with it!

    By Learn Additional on Sep 20, 2014