In honor of Fibromyalgia Awareness, I want to share what a day in my life with Fibromyalgia/Chronic Fatigue (FMS/CFS) looks like, as well as encourage everyone with the means to please help support funding for continued Fibromyalgia research performed by the dedicated team at The City Of Hope, Duarte, CA. Without these wonderful people, us fibromyalgics would not hold as much hope as we do today!
So much is misunderstood regarding this condition. It is not as simple as pain and fatigue. The symptoms affect every system of the body. A day-in-the-life is a rather difficult concept, because there is no typical day.
There are levels of disability within this Syndrome ranging from pain without fatigue, being able to work and care for family and a home, and being completely bedridden with severe pain and extreme fatigue. Within those levels are degrees of abilities on any given day. And, of course, there are varying symptoms of illness...
My day began with having had a good night’s sleep and plenty of energy upon awakening. I showered and washed my hair, with plenty of energy for blow drying and styling, put on makeup and got dressed for work. I helped my daughters prepare for school and made breakfast. We engaged in conversation, found missing shoes and homework that was due. I drove them to school in another city 30 minutes away and then went to work. I was a salaried social worker at 39 hours per week. I never worked less than 45 hours due to the large case load. I ate lunch on the run if I ate at all.
At 3 pm I picked my daughters up from school, took them to their grandmother’s house and went back to work until 5pm. Then we’d drive home together. I cooked dinner, did the dishes, engaged in family time, conversed with my husband about our days. Weekends were spent in our beautiful park walking, hiking, swimming, having picnics, flying kites. I also lifted weights 4 hours per week and played tennis. I did the weekly grocery shopping, laundry, paid bills and cleaned the house. My life was rich. I was happy.
I awaken tired, no matter if I slept a eight full hours. Non restorative sleep is one of the worst fibro symptoms. Sometimes pain awakens me.
I have to use my morning to prioritize the day’s tasks.
Often depending on my level of pain, energy and ability to concentrate. I always look at my calendar because if it’s not written down, it’s not real. Missing appointments can result in being discharged as a patient or no show fees.
Getting up in the morning often takes hours.
I never schedule appointments before 11am. I lay on my heating pad and talk with my support group friends on my laptop. I watch a couple of hours of tv if I’m really hurting, fatigued or experiencing fibro fog which makes tracking anything nearly impossible.
I am too tired during the day to shower. The hot water and activity, bending, twisting, standing, is exhausting. I have to shower before bed, but if I wait too long, I won’t have the energy to shower at all. I can only wash my hair a few times a week. I let it dry during the night because I am usually too weak to blow dry it. I only wear makeup if I’m going out, which is rare.
Structuring my day is necessary if I’m to accomplish anything.
It would be very easy to just lay in bed all day, and sometimes I do. It’s not good for me physically or emotionally to succumb to this malaise. I encourage myself to be productive as I constantly feel like I am just getting over the flu. This requires a delicate balance.
With the help of cfidsselfhelp.org, I am learning to pace myself. No matter how fatigued or in pain I am, I accomplish several tasks per day with long breaks in between.
Keeping a positive attitude is important.
I focus on my achievements, not on what I haven’t yet accomplished. After breakfast, I walk between ten and twenty minutes per day to build up my energy. If I really don’t feel up to it, I allow myself to stop after only five minutes, but once started, I usually can walk for over ten. Getting started is very difficult for me. I stop before I get too tired. I don’t want to cause a flare up.
With that accomplished, I evaluate how much rest I need before doing another activity. It could be dusting or vacuuming or cleaning the kitchen or bathrooms. Those are the core chores and none are done on the same day. To do so, even if I could manage, would result in my being in bed for four or five days unable to do anything. I used to clean the house in one day. Now it takes me all week and that’s fine.
I allow myself to be flexible with my to-do list.
I listen to my body. Many breaks are necessary while performing any activity. If I’m having a particularly bad day, I do minor chores like doing one load of laundry, sweeping the kitchen floor and watering plants. I don’t have to do everything on my list.
I spend a small amount of time daily on paperwork.
I look through all of my papers and prioritize what needs to be done that day and what can wait. Fibrofog, the inability to concentrate, makes doing all of the paperwork at once impossible. I keep all of my paperwork in one place; on my desk if I’m having a good spell, or on my nightstand if I’m not. I use auto bill pay for everything. I review my bank and credit card statements monthly to catch any discrepancies.
I check my emails every morning, or they multiply quickly.
I unsubscribe to limit the number of emails I get and then enter “spam” as to avoid getting anymore of them.
Creating email folders is a good way to organize and save time. Anything from a creditor or utility is a priority. I have folders for purchase order confirmations, cancellation confirmations, , tax records, etc. I shop online alot and have found that companies often have hidden membership fees that they will continue to charge on my credit card. Buying anything “free” or “free trials” often result in autoenrollment monthly charges. Even telling a representative that you do not want to be enrolled in autoship is no guarantee. Saving the emails to these companies when demanding a refund saves time and is proof of your attempt to contact them. This increases your chances of getting a refund.
After dealing with emails and statements, I take a long break. Mental work is exhausting.
I have learned that by 3pm, most of my energy is gone.
I make dinner preparations prior to that. Starting dinner by 4pm assures dinner by 6pm. I always make extra portions for leftovers for when I do not feel well enough to cook. Using the crockpot is the easiest way to make a healthy meal. I try to spend time during the week to prepare a menu and create a shopping list for the following week’s meals. Otherwise, it’s really easy to buy food that makes me feel worse, such as processed foods.
I rest the day before I have to leave the house.
I am still too disabled to work, although I’m in the process of reversing my symptoms with Dr St Amand’s Guaifenesin Protocol (fibromyalgiatreatment.com). I do help my MIL once or twice a week for a few hours. If I do not rest all day the day before, I will be unable to help her.
I learned that it’s okay to accept help.
My husband does the major weekly shopping and helps cook dinner. He also does the dinner dishes. If I’m experiencing back pain, he vacuums, too. I used to feel guilty. Now I just feel appreciative.
I used to feel badly that I could no longer do everything I once could. Careful reflection has helped me understand that I still do a lot for being so ill. I hope you can see that in yourself. I know many of us feel alone, as our families and friends often have difficulty understanding. Perhaps this will help.
Be patient and kind to yourself. Pace yourself. Appreciate your abilities. You are valuable!