After reading Robin Dix’s recent column “A Day in the Life of This Fibromyalgia Patient,” I was reminded that although we all suffer through the complexities of this illness, we experience the symptoms in different ways and to different degrees. With that in mind, I am providing insight into what my life is like.
For me, pain and fatigue act on one another to varying degrees. When the fatigue is heightened, not only is my energy drained, but also my muscles feel like lead. With escalated pain, it causes other forms of pain to emerge (usually more spasms or burning sensations), and while fatigue is present, it doesn’t dominate. It is only after the pain lessens that the fatigue turns to sheer exhaustion, and I usually end up sleeping.
If you have read my columns, you know that weather practically rules my life, much more so in the past few years. Because every day can take a 360-degree turn, I do not have a set schedule, but I try to begin and end my day at the same time to provide some structure.
Good days are defined as having some energy and my pain is in its regular state, like a motor humming in the background. Other symptoms, like fibro fog, headache, gastrointestinal irritability, are mild or non-existent.
A bad day is when the symptoms limit my functioning considerably, or worsen to the point that I must take to bed for most of the day. Again, there are many degrees of variability in good and bad days, but to avoid overcomplicating, I’ll follow my basic ebb and flow.
Since mid-November, my days have started at 5 a.m,. thanks to a bouncy Labrador puppy who requests breakfast at this hour. (Before her our other loving Labrador began her day at 6:30 a.m.) I spend my days playing with her and tending to her needs, which consumes most of my energy. In addition to her care, she “supervises” as I integrate various household tasks.
I wish I could say that I dedicate certain days to certain tasks. But more often, what needs the most attention and what I am up to doing dictate what gets done. On good days, I am able to accomplish a few tasks; bad days I spend mainly on the couch, with the puppy bringing me toys.
I learned the hard way never to combine certain tasks in the same day, like vacuuming and laundry. When my husband returns from work, I lie down for a couple hours. Meals are easy to prepare (garden salad, spaghetti) or microwavable for the most part. Cooking from scratch is rare. My husband’s two days off are my respite days, when I don’t get up until mid-afternoon. On a bad day, I will sleep until evening.
Just as I am certain to arise every morning at 5 a.m., there are a few other activities I try to do on a regular basis as a source of enjoyment. I enjoy reading research articles and autobiographies, as well as doing crosswords and memory-testing puzzles.
For companionship, in addition to my puppy, I rely on regular contact with friends. Aside from some neighbors, I rely on Facebook to keep in touch with close friends. Radio and television also are a major source of entertainment. I thrive on classic movies, British comedies and old sitcoms. Most evenings, I try to spend quality time with my husband, perhaps with light-hearted competition watching Jeopardy or a sporting event.
Before bedtime, I look forward to the pulsating massage of a hot shower. But during extreme flares, I am too exhausted, and end up going straight to bed. Perry Mason reruns are the last event of the night, and with the aid of Neurontin (gabapentin), I am guaranteed 3.5 hours of sleep. But if I have irritable pain, a flare or a headache, insomnia becomes my friend for the night.
Over the years, I have learned to expect the unexpected and getting upset about bad days only makes matters worse. Even more so, I know that when I am in a flare, a good day is somewhere around the corner.
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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.
I felt like those were my exact words as to how I feel most of the time. I don’t have a husband or dogs and I still work part time. I to try not to schedule two activities in a day, when I do, I know pain and fatigue follow.
I hope this was validating for you; at the same time, I am sorry that you experience the same degree of symptoms like me. Glad that you are able to work; sounds like you already have a clear idea of how best to handle ways to reduce over-expenditure of your energy. While you don’t have a hubby or puppy, I hope that you have friends/family that provide companionship and support when needed. 🙂 Take care!
Excellent article Lori! Thanks for the glimpse into your life ?
Thank you, Robin! As well as we sending ‘kudos’, your articles provide me with added inspiration. Your voice has a more uplifting spin to viewing life with a level of optimism I feel I have yet to achieve; but, I’m getting there. 🙂
Loved reading about your days……I couldn’t have said it better…..when I read about someone else’s day I don’t feel so alone with my own, which usual is exactly what you wrote…..I always look forward to better days. Sharing with others has helped me cope so much better. Thanks for sharing
I am glad that insight into what my days are like helps you too. I know that others are enduring like myself, but it is always comforting to me too when I read others’ similar experiences. With the summer approaching (my favorite season), I cross my fingers (toes, legs, eyes, LOL) for certain stable weather patterns to remain so that I can have a good day. Even if I just sit outside in the sun, I am happy. Thanks for your comments. Many good days to you to enjoy 🙂
Thanks Lori
I hope more fibro friends share their days with us.
I find typing very laborious because along with the fibro in my hands I also have arthritis.
On days that I feel alone I’ll read my FNT and realize that I’m not.
thank you again
PS thank goodness for spell check!!
It would be interesting to read about others’ lifestyles with FMS. I find it of comfort and support too. The one fact that brings some consolation, to me, in having this illness, is that regardless of age, gender, geographic location, duration of symptoms, etc. we ALL have just about the same symptoms (some as the illness progresses, some have as their trigger point, some during flares) so we can understand what each other is enduring. It may play out differently in each of us (i.e. some symptoms/conditions more predominant in some or intermittent), but we understand. It creates a united front in coping and supporting each other, especially when you may face little compassion from others or just simply too exhausted trying to explain what it feels like to those with FMS. I have arthritis in my fingers, and I understand how the stiffness and achiness is just too much (or typing a great deal – like I am now 🙂 )will create swollen fingers the next day. I was fortunate to get a inexpensive copy of DragonSpeak a few years ago (believe it was on eBay) that helps when I have to write papers, etc. The more updated versions allow you to do so on e-mails, FB, etc. Thanks for comments. Take care!!
Thankyou for the wonderful article Lori!My days are similar,I play with my cat everyday.He is my companion animal.I am a widow is he keeps me company.My bad days are so similar to yours and other FM warriors.We push our bodies too much and we suffer for it,but we battle on! God bless all of us who struggle every single day with a chronic illness.Be good to each other and.live our neighbors.Yay Facebook LOLL????
Thank you, Connie! I never thought writing about my life would one day be of benefit or interest to another 🙂 I am sorry for the loss of your spouse; I can’t even begin to imagine the sorrow you deal with . . I have known my husband for close to 20 year and married for 16 and we have endured quite a few ventures in life, fortunately the challenges have brought us closer together emotionally. I hope that you have many wonderful memories that bring comfort to you. My Samee is my ‘little girl’ (just as the previous Sammie who passed Aug of last year; and Samantha that I met with my husband when she was 6 and passed in 2010). I was fortunate to been raised around animals; having had a dog and rabbit when I was young. I have always considered pets more than animals. A human can bond with them in many ways and get a certain type of unconditional love that is special and rare. I am sorry for your bad days; you are so right that most of us tend to overdue on good days (but who can blame us 🙂 )and just do what we can to soften the blow on the bad days. I am sure many have discovered a type of inner strength never thought possible, I know I have. My heart goes out to all of us with chronic illnesses. Take care of yourself especially during times of stress/flare brought on by missing your husband! Hugs!
I think I’m starting to show signs of FMS. The past two years have been rough and I would love to hear how this all started for you. I’m nervous because I have not been diagnosed but the doctor thinks this will be my story. Please share any early symptoms or advice you wish you would have had.