A Day in the Life of This Fibromyalgia Patient

A Day in the Life of This Fibromyalgia Patient

Through the Fog
I feel like I’m one of the fortunate few who actually gets the recommended seven to eight hours of sleep per night. However, fibromyalgia and chronic fatigue syndrome keep me down for the count most of the day. Because of this, I’m so thankful for my adjustable bed, a beautiful sunny bedroom, and a husband who takes really good care of me. There’s so much that I love about my life — yet so much that I find difficult and frustrating.

I usually lay in bed when I first wake up and catch up on social media, play a few games, pray, and check my calendar for the day. If I’m scheduled for an appointment, I try to make sure I’m well rested beforehand. I know that when I return from my appointment, I will most likely have to crash for a few hours. As such, I have to plan rest into my day.

Once I get out of bed I usually get breakfast, make a cup of tea and sit in my recliner and read for an hour or so. I can’t sit too long for extended periods, as my tailbone and my sciatic nerve start to really hurt. Otherwise, I’d be content to read for hours. I usually sit and read a few times each day.

I try to shower every other day, but if energy doesn’t permit, then I resort to wipes and dry shampoo. Showering completely wipes me out, which seems to be a common complaint among people with fibromyalgia. I never take baths because I find it too difficult to get in and out of the bathtub.

I set a timer for 30 minutes at various times throughout the day. This allows me to spend a concentrated amount of time working on my columns and my books, as I can only work for 30 minutes at a time. When I’m not writing or reading, I tend to binge-watch shows on Netflix, Hulu or Amazon Prime.

Besides my writing, I also have an affiliate store on Amazon. I sell nutrition products for a network marketing company that I personally have used for several years. It’s important to me to bring in some residual income.

My husband is really great at making a few dishes that I can just reheat when he’s at work. Two of my favorites are bison vegetable soup, and rice and stir fry veggies with raw cashews. I also enjoy a sandwich on whole grain bread with a few chips made with avocado oil. I like simple and easy.

As a soon-to-be lady of 62, life is precious to me. I truly enjoy being there for others suffering with fibromyalgia and offering support and encouragement. My faith in God is what keeps me grounded and brings peace to the chaos that has become my life.

I thought you would enjoy a small glimpse into my life. You are all precious to me. ?

***

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

24 comments

  1. Em says:

    So thankful you have a supportive spouse. A true blessing and I surmise you know this and are thankful. I have commented at times. I also have OA, DDD of the spine (doing hard physical labor) and had Lyme Disease in 1983 which when one thing flares-think we all are aware of this chain gang. I also found out that I was pregnant w/ my 2nd child when the Lyme attacked-little was known then and now there are many whom suffer w/ this disease. My eldest son was born healthy. It never was really treated (the Lyme) because the docs knew nothing about it. By God’s grace I am still here and doing the best I can and have learned to say “no” and not give a reason.
    Blessings All

  2. StevefromMA says:

    Thanks for posting Robin. FM folks lives are probably somewhat alike but somewhat not, just like our symptoms.

    Bison vegetable soup! If you are in the mood someday you can post that recipe!

  3. open4thot says:

    I was told by my Mother who lives alone in a 6 bedroom located on one thousand acres (household help 6 days a week) that she was unwilling to assist me financially because “instead of laying on my fat ass all day, expecting others to pay for everything, I should get a job!”
    I have worked my entire life since 15 yrs old. I have BA, MA, JD – I paid for my education and graduated top of my class each time. Until I suffered a broken back multiple ruptured discs and had neck fusions at several levels I had a thriving law practice and was engaged to be married. After multiple surgeries, my disability was compounded by the crippling effects of Lyme disease and severe Fibromyalgia. Now, a decade later, I have sold any and everything of value, my savings have been exhausted, my credit destroyed and my small pension barely covers the rent.
    Yet, my own mother along with other family members refuse to acknowledge the reality of my disabling illnesses and fault me for not “getting off my ass and getting a job!” Because I am prescribed multiple medications they have labeled me a “drug addict”.
    Anyone who does not recognize themselves in my story, should consider themselves fortunate. The prejudice and discrimination we endure on a continual basis must be addressed by society! (yet, most of us (if not all) are too busy dog-paddling through treacherous seas to speak up for ourselves.
    The Mighty have fallen!. . . and need help getting up ;~{
    Thanks to all for contributing to this website. I look forward to each new article. Warm hugs to each of you!

    • Em says:

      So sorry. I do get it. I have been accused of some of the same things. Lyme in and of itself is tragic-toss in the other misfortunes and it is a heavy load. I do make ends meet and also gave up an active life and doing the things I enjoy. Took me a long time to accept that I am not what other people think they see. Attitudes of others say nothing about who you are-it says a lot about who they are and will likely continue to be. I have days where life is as traveling down the River Styx with Cerebus snarling, drollingand snapping at me trying to snatch me from the boat and throw me through the gates of Hades-there are days it feels as though the beast has succeeded.
      With this being said even the mighty fall, but the true warriors will continue on and when they have fallen someone (may) come along to help and comfort.
      There are many online support groups-many are full of negativity. Advice until you are sure do not follow or you will end up feeling worse. I can assure you I do not live in Bambi Land, but some of the crap I have read leaves me miserable.
      This comment is not personal and I as well as others-WE GET IT.
      Thank you for sharing and I would that no one ever had to suffer-I am also a realist.

    • Mary Hamilton says:

      I have a brother who will not speak to me anymore because when my mom was sick with MS, I didn’t take care if her all the time. None if my family and friends understand how much I hurt except my wonderful husband.

    • Mary Hamilton says:

      It is awfully rude and insensitive of your family, who are much like mine. I’m so sorry you have to endure such abusive treatment. I have run out of patience with people like this. I will pray for you.?

  4. StevefromMA says:

    There was an old black and white TV series in the 50’s called Naked City, a drama about a different fictional person in NYC and his life each week. It always ended ” there are 8 million stories in the Naked City, you have just heard one of them”. I think of that show every day when I hear our stories.

  5. Connie Alvarez says:

    Thanks for that wonderful article Robin and sharing your day with us.We are all warriors in my book and I pray that we all can keep up the good fight! I do sympathize for those of us who have no support system.We expect our families,of all people,to understand our illness.Unfortunately,that is often not the case.I am 64 and live in a senior building.I relocated from California when my husband passed away because my son and wife live here. They never call or come over.I only see them at Christmas.Yes this hurts me but I have learned to have my own life.I do have counseling and good doctors and the good Lord sees me through every day.I love all of you and thank God for you Robin and this wonderful site.You my dear are a blessing to all of us.Thank you!

  6. James milne says:

    Hi all, Yep F/M is full of trials and trepidations, sleep was also a difficult process for me until I started smoking marijuana at night 6-8 puffs and I am out like a light, the only problem with this is I don’t like the high much and it is illegal, I don’t smoke during the day but a good nights rest helps me to cope a lot better,
    getting hold of medicinal oil is quite difficult as well and is expensive, I just wish our government officials would realise the good this can do for not just F/M sufferers but other ailments as well. Keep up the good work, James

Leave a Comment