Coming to Terms With the New Fibro Mama by Jean Marie Keenan-Johnston

In the seven years since I started battling fibromyalgia, I have to say the toughest times I’ve endured were finally acknowledging the loss of my teaching career, watching all my mommy friends posting on Facebook every Spring about all the playground trips they were taking, and finally admitting to myself that it was time to cave in and apply for a disabled parking placard.  Losing my classroom was obvious…I couldn’t keep a schedule with my personal life and I was forgetting all kinds of commitments. How was an employer going to put up with me?  Watching my children miss out on playground outings and other physical playtime was a given…it wasn’t easy to accept the fact that I couldn’t handle the physical demands on me that outdoor play brought with it, but it wasn’t like I had a choice.  There are some things I just can’t do, and there are other things I could manage if I pushed myself, but I’d pay a very high price for it later, sometimes landing myself on the couch for a whole day or longer as punishment for my crimes of high activity.  What didn’t come easily or quickly was the parking placard.  It was suggested by many of my medical providers that I apply for one because it would help make me more independent as I tried to maintain being an active mom, but I had a lot of excuses for why I hesitated.  My first thought was that I was too young…there were others older and sicker than I was who needed that kind of assistance more than I did.  I felt guilty for taking up one of those spots when others needed it more than I did.  Then there came the day when I had to do some errands that had me on my feet a lot longer than I planned.  That was my turning point.  Those last steps from the store to the car felt like they went on forever.  The pain in my back, my legs and my feet was more than I could tolerate.  I realized that even parking a little bit closer as the parking placard would allow would help me a ton.  And the very next doctor’s appointment I had, I heard myself asking for help with the application for the disabled parking placard.  It took some time.  I still don’t feel like I’ve adjusted to using it.  I’ve had it for a couple of years and I still feel eyes burning into me from senior citizens especially as they watch me get out of my car with my children.  A lot of times I don’t look that bad going into the store…it’s coming back out that I look like I need it.  Then there are other times that just driving that short distance makes me so stiff that I’m limping as soon as I go to walk in through the store’s entrance.  Even when I feel attention for using it, whether it be a misunderstood opinion of me or a look of concern from a bystander, I now feel grateful that I’m able to have such a tool to help me get my errands done on my own.

And now recently I’ve found myself at another crossroads.  A few weeks ago I had what felt like the hundredth time when I had so much difficulty walking through my house that I had to really focus to avoid falling and I needed the assistance of holding onto furniture and the wall for support.  Other times I’ve shrugged it off when it happened…it was only a problem that came up every now and then.  When this all started, I would try to get up from the couch and feel myself falling backwards back into the seat.  I joked on my blog that I had visitors each morning…either Igor had come to visit or it was Frankenstein.  (Igor depicted me walking one way, hunched over unable to move my legs correctly so I was walking with one leg dragging then the other.  Frankenstein was over when I had to walk with both legs stiff at the knees unable to bend properly to walk the normal way.)  Now it seems different.  I’m finding myself dealing with this more often than before.  When it happens, it’s scary.  I feel like the bones in my feet are rubbing together, and my legs feel like they can’t support my body.  It’s amazing how much thought “doesn’t” go into walking when your body does it correctly, but when something is wrong and your body is arguing with your every mental command, just walking can be a pretty tough activity. Falling is scary, but not being able to walk across the house without assistance is even scarier.  I thought just using the wall or furniture when I needed occasional assistance was enough.  But I’ve had another a-ha moment much like the one I had with the parking placard.

Just last week I admitted out-loud to my husband for the first time that I thought I needed assistance…I told him I was going to talk to the pain management doctor about using a cane when I see her next week.  It was the first time I said those words out-loud.  I am fighting the feeling of feeling older before my time by needing this help every now and then.  I’m trying not to worry that I’m going to get much worse…it’s easy when you have fibromyalgia that has progressed like mine has to worry that you’re going to end up bedridden one day.  My husband’s mother had a stroke when he was only five years old, so I know watching his wife travel down that same road with mobility is really killing him.  He never imagined I would become disabled from this dreadful disease, so I know canes weren’t something he imagined he’d see in our house as early as my 40’s.  

But I’m fighting very hard to look at this with a positive perspective!  I already bought myself a walking stick.  I actually found it in a souvenir shop when I was traveling with my girls…it’s a walking stick with the rubber stopper on the bottom like a cane would have.  And then I came up with another a-ha moment…I had to go on a trip for a few days with my daughters because my oldest daughter’s graduation took us out of town.  I thought I had everything arranged that would be needed to make it work around my needs from fibromyalgia…we booked a hotel room for the night before so I would be sure I could get there on time since my mornings are so tough.  We booked a second night at the hotel since I was sure I wouldn’t be in any shape to go home after such a long, physical day.  (It was a huge financial strain, but it was the only plan I could come up with to ensure my disability wouldn’t ruin her special day.)  I had two helpers come with me – my mom and my cousin were there as my extra hands.  But once I got home I realized, it was still much too much for me to handle without a lot of pain and fatigue.  The hotel bed was torture, the over-scheduled days were tough, but what was my greatest difficulty was all the walking.  I’m still recovering from the two and a half days away and we got home two nights ago.  And so I shared my second a-ha moment with my husband…I told him if we ever have another opportunity to go someplace that requires a lot of walking, if they aren’t able to find ways to help my fibromyalgia improve before that day comes, we’ve going to have to look into getting me a scooter.  My first thought as a mother was “how would I manage my very active four-year-old?”  And then my next thought was clearer…doing this would help me be able to get out there into the world with them rather than being stuck at home even more now that my legs and feet are creating so much difficulty for me.

So there you have it…I’ve been working to come to terms with the new fibro mama I’ve become!  If you see me out and about, I may be walking on my own two feet.  Or maybe I’ll be styling my really cool walking stick to help me hobble along.  Or maybe I’ll be buzzing around on my scooter playing Indy 500 with my children.  But no matter what, I’ll be the mom who fought fibromyalgia’s efforts to take away my independence and keep me home instead of out in the world with my little ones!  I’ve refused to give up my fight against this disorder for seven years now.  I’ve given every ounce of my being to be the mom I really truly want to be.  This new obstacle isn’t going to change that.  

  1. 2 Responses to “Coming to Terms With the New Fibro Mama by Jean Marie Keenan-Johnston”

  2. Thank you, for sharing. I was looking at my FaceBook page today. All the smiling moms and kids doing exciting activities. I had a ‘down’ day. I haven’t fibromyalgia, but I suffer much like you. I feel like I walk like frankenstein in the morning. Mornings are hardest for me. I am happy to hear you say you will utilize the tools that will help you do the activities you need to do, and want.

    I hope you do not worry at all about those looks you get from judgmental people, as you use the placard. Walk a mile in my shoes, before you judge me. No one knows the reasons you have, but they are very quick to judge.

    Thank you, again, you are helping me in many ways! When I saw my FB page, I said to my husband that, this is why I love MLTS, I hear from moms that have the kind of things I’m dealing with, and can’t do everything. I thought of you and your fibromyalgia. When I came back onto FB, I saw Robin had posted your blog! Things happen for a reason.

    Please take care, you are not alone.

    By Lori Loesch on May 26, 2014

  3. I’m happy you find my posts helpful. :) That’s why I try so hard to keep up with blogging! This past winter I missed a LOT of opportunities to post, but I’m trying really hard to keep up with it because I want to feel like having this condition comes with SOME sort of purpose. Being a former teacher, I’ve always had a caretaker personality, so maybe that’s why I’m so drawn to raising awareness for the “invisible diseases” and trying to help those with the same symptoms as mine manage day to day life. It feels good to know I’m accomplishing some of that goal, so THANK YOU for sharing your comments. I means a lot to me!

    By Jean Marie Keenan-Johnston on May 29, 2014