When Fibromyalgia Runs Your Life 24/7
By: Marnie Dueck
Hi, I am fibromyalgia.
No, no, sorry. I am Marnie, I have fibromyalgia.
It’s just that fibromyalgia consumes me. It’s all I feel, think of and see as a future.
A little about me. I am truly an empathetic person. I was always a caregiver. I’d race to give my dad water on a hot day when he was mowing the lawn. Or bandage up boo boos. I knew early in life I wanted to be a caregiver and mom.
I am a loving mom to two amazingly well behaved boys. And I found myself working as a nurse’s aide, working part-time, in my job for nearing two decades. Doing a job that I loved dearly. And I loved being the cool involved mom.
Then one day I had a car accident that changed my life forever. I developed fibromyalgia.
I had to stay off work for over a month. I started physiotherapy and returned to work on light duties at a reduced hourly amount. It was difficult to be at work, trying to do what I could in a chronic care unit.
It was physically and mentally discouraging not being able to be the person who did the job I wanted to do. And then going home or to therapy completely wiped me out, leaving me with not much left to give to my husband and kids.
This went on for a year and a half. I started having falls and the light duties stopped. I continued with physiotherapy, and then moved to aqua therapy. It felt so much better to exercise in the water than on land. But I was not getting any better. Just maintaining my body from declining further. It was so daunting.
So its been almost three years since my car accident. My life has changed so much. I no longer work, however I see going to the YMCA as my job now. My job is to take care of my body.
In this time of adjustment, losing my old life and learning to accept this new way of life… I have had to seek out therapy from a psychologist to help me stay positive. To help me want to stay living here on this earth. Trust me, my family is amazing, it’s just that the pain never goes away and I am so tired.
This is now a typical day for me.
I get up at 7:40 a.m. I have to use a bed rail in order to help myself get out of bed take my meds and go to the bathroom – where the cold seat sends spasms up my back and down my legs. I then put on my fuzzy socks and sweater, even in the summer.
Next to call out to my preteen to get up for school as I sit I my recliner. I make sure he eats, gets dressed and has what he needs for school. I sit uncomfortably overseeing it all. I shift around in my chair constantly to adjust to how my pain is.
I will then watch TV or scroll Facebook to pass the time. Before lunch, I get up from my chair and go off to the YMCA to exercise.
Exercising in the water is great, however it too has some issues for me. I have to make sure I shower before I go in, but the water temperature has to be perfect or it causes more pain. I mean, I am already dealing with the jaw pain, tinnitus, spasms and constant dull pain that is always present, but the water temperature can give deep sharp pain on top of that.
Getting into the water is another story. I have to step in slowly to allow my body to adjust to the temperature of the pool. I also have to be mindful of the people in the pool. I am constantly rescheduling when I go because of programs that are running at the same time. I need to be in the pool with less people because I can’t be bumped or splashed. A simple drop of water can hit my body and cause my body to spasm because the shock of the cold water hitting me.
After I’m done exercising in the pool I take my time drying off after my shower. I tend to shower mainly at the YMCA because at home all we have is a shower in a deep soaker tub. It is hard to get in and out of, and I have fallen in there too. Anyway, I have to sit to blow dry my hair because I have no strength left in my legs to stand and in my arms to hold up the hair dryer. Sometimes I just sit for half an hour waiting for my body to be ready to be dried off.
Some days I’ll go get groceries, and most days I end up having to use a mobility scooter to be able to make it around the store. When I come home with groceries I usually have one of my two kids bring them in because I need to rest. So, I need to plan grocery shopping around when my kids are home and able to help.
My evenings are a mixture of planning for dinner, setting up… resting, chopping… resting, cooking… resting. You get the picture. I can do a little bit, then I have to rest. I also use a drafting chair in the kitchen so I can rest while preparing.
I have had my issues with cooking and baking. I used to love to bake. But now I tend to drop things. I have had to take my big buckets of sugar and flour and put them into smaller buckets that I can manage. But spasms or strength takes over and things get dropped.
I have had two bad burns. One was when I was pulling something out from broiling. I ended up spasming from bending over and my hand hit the broiler element. I got a second degree burn on my hand. Another was when I spasmed and had a hot pot of water pour on my knee, another second degree burn. Because of this, I don’t always cook dinner. I have to see how I feel if I’m up to making it, otherwise it’s a do it yourself meal.
I tend to spend the evening in my recliner. Shifting around as need be. My window blinds are black, because the light or glare from outside causes big headaches. I tend to live in the dark. I also have color changing lightbulbs so I can adjust them to what is best for how my constant headache is like.
I no longer do things with my kids because it’s too exhausting and they have learned to be more on their own. I guess kids do that anyway, but it is disappointing because that’s not the mother I wanted to be.
Throughout the day I’ve had to take multiple medications in order to make it through the day. I have an app (medisafe.com) that gives me a reminder to take my meds because I’m so forgetful. If I don’t take them, I pay for it for hours, and sometimes days. I had to take other medications before, but I found the side effects were so bad that I was best not to be on them. I learned how to control some pain through thought and rest. And I just manage with the remainder of the time.
I’m in my mid 40s and I feel like I’m much older. I was so looking forward to being the perfect mother and wife. It’s hard to think positively when you’re constantly in pain and constantly depending on other people. I am depressed that I’m not living the life I wanted.
What keeps me going through is my amazing family. My parents, my husband and my kids. They all motivate me to want to keep going. But having a past working in chronic care, I know that my life going forward will be more difficult and it’s disheartening. I’m scared to age.
Finishing my day, in the evening I take two different sleeping pills. I am in bed for eight to nine hours of tossing and turning. Never getting a restful sleep. Never dreaming because I never get to that REM sleep. The sheets have to be tight because wrinkles hurt my skin. No little crumbs of anything as well, because they hurt like knives on my skin. I need the room dark, I need earplugs to drown out my teenager gaming in his bedroom next door. And you can not touch me in my sleep. It’s hard work trying to get a good sleep.
So, after that, it is back to getting up again in the morning. Starting my day all over. With my ever-present pain. My spasms, twitches, my muffled thoughts. My words that are sometimes lost. My dissatisfaction of not going to work and not being the mom I want to be.
But I must smile. Because I am loved. I hope for a cure, I hope at least there could be some better medication. And I wish this disorder never existed. I had so much more planned for my life. I shall take it not one day at a time but. One moment at a time. Trying not to think too much into my future. Trying to live for the now.