Thoughtful, hardworking Ph.D. scientist with 10+ years in academia and industry well-versed in many aspects of health and science.
When you live with fibromyalgia, the images you present to people rarely, if ever, reflect your reality. You may seem cool, calm, and collected to your friends, family, and even strangers, but they could just be seeing you on your good days. On the good days with fibromyalgia, you may be able to get up, get dressed, go out, and live life to the fullest. But, what about the bad days?
Bad days can be filled with exhaustion, pain, anxiety, and depression as you stay wrapped up in bed with a weighted and/or an electric blanket on or on the sofa not wanting to move. You may not even get dressed, shower, and may find doing anything at all daunting.
Because fibromyalgia is an invisible illness, it is easy for people to assume you are healthy, even when you are far from it. You may look like you have it “all together”, but your house is a complete mess and your hair is unkempt and unwashed because washing it is too painful.
If this is you, you are not alone. On my bad days, I try to avoid life and people as much as humanly possible. I am depressed, exhausted, riddled with pain, and irritable due to my anxiety. I do not even like to be around myself on bad days.
There are sides of living with fibromyalgia that we do not always let others see. We hide our messy rooms, the medications, pain creams, and other medical paraphernalia we keep on hand, and anything else that makes us seem “less than perfect”.
Well, I do not know about you, but I am not perfect. I am an imperfect human who is just trying to live life to the best of my abilities. I have compiled some photos that showcase the “bad days” of my fibromyalgia and my daily life. I am not ashamed anymore and neither should you be.
1. Messy House
Yeah, my house is a mess. I would bet that if you entered anyone's home at any given point in time it could be messy. Most of us do not live in our dream Pinterest board home nor do we have a gaggle of people around us to keep our lives and homes tidy. If you entered my home right, you would see a fine layer of dust everywhere courtesy of the new laminate flooring I had installed last week and the smell of paint fumes in the air from this week’s adventures in adulting.
You would also see laundry on the couch, throw pillows on the floor, dishes in the sink, and a grocery cart in the foyer. I'm going to be honest and say that I'm OK with my mess—there is a rationale behind this madness. I just finished several loads of laundry and I am honestly too tired to put it away.
The throw pillows are on the floor because (1) I am sitting on one couch, and (2) I am deep cleaning the other. The dishes are in the sink because I just ran one load and I am again too tired to unload and reload the dishwasher again.
Last but certainly not least, the grocery cart is still in the foyer because I do not have the energy to take it back downstairs after loading and unloading the groceries. While others see chaos, I see my weekend’s challenges. Challenges that I will overcome with time and patience.
2. Crazy Hair, Do Not Care
I used to get so many compliments on my hair. Strangers would stop me and asked me about my hair and my hair care routine. Now, not so much. This is how I normally wear my hair. Since I've gotten older, it has gotten dryer and I don't typically wash it very often (maybe two to three times a week).
However, it does tend to get greasy by Day 3, so I'll use a dry shampoo and then just pull it back in a ponytail or a bun as shown here. On bad days though even doing this hairstyle and routine is a struggle. My scalp can be extremely sensitive and just combing my hair can be painful. If that is painful, you can just imagine what washing, conditioning, drying, and then styling feels like.
Often, I just wash and condition my hair at night and allow it to dry overnight. That way, I am not in a rush and can take my time. Then in the morning, I get up, comb it, and put it in a bun, ponytail, etc. On a good day, I may even straighten my hair and wear it down. Those days are rare, so I usually take a selfie to celebrate!
3. Medicines, Creams, and Braces
I guess you could say I have a small pharmacy/medical supply store in my house. I have one tote devoted solely to medical braces and devices to help me live life to the fullest. To name a few not shown in these images, I have:
- three (3) hand/wrist braces,
- two (2) boots-a short and a long version that extends to my knee,
- an arm sling,
- a back brace,
- an elbow brace,
- two (2) ankle braces,
- two (2) knee braces,
- a full-back massager,
- a TENS unit with replacement pads,
- foam rollers in a variety of sizes,
- compression sleeves for my forearms and calves,
- compression gloves for my hands, and
- compression socks for my feet.
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I almost forgot the lovely device to help stretch my neck which slings over the door and allows me to hang from it. Sounds like a fun sight, doesn't it? I also have an assortment of hot and cold packs depending on the pain that I'm experiencing at the time.
Prescription medications are few in my home as many do not work for me and/or I have an allergy to them. However, if you check the medicine cabinet, I do have a slew of over-the-counter medications and pain creams. If it claims to relax muscles, reduce inflammation, and ease away pain, then I have probably tried it and have it in my cabinet somewhere.
4. Morning Routine
My typical morning routine starts the night before. I will set my clock to wake me at least two hours before I need to be awake. I do this because I rarely get a good night's sleep i.e., restful night sleep and I need that extra two hours to fully wake up and start my day.
For example, if I need to be awake by 8:00 o'clock I will set my alarm for 6:00 o'clock. I do however get up out of bed and make it to the couch. Generally, I will turn on the local news and casually watch/listen to it while I am “waking up”. Once I'm fully awake, I either work out, take a shower, or have breakfast.
On rough mornings, I may wait to do all three of these things later in the morning or not at all. This routine works well when working remotely but not so great when you must go into an actual office or workplace.
5. Cucumbers Are Calming, Right?
To set the story, I recently had surgery on my left hand/wrist and had my family come to care for me during my recovery. While my father was here, we decided to have a “spa day” and use some of the cucumbers straight from my mother’s garden. When I placed the cucumbers on my eyes, I really did not expect this reaction. A few minutes later, my eyes were an itchy, watery mess. My eyes burned so bad that I wanted to stick my head under a faucet of cold water. I immediately threw the cucumbers off and scrubbed my eyes almost raw. A couple of rounds of allergy medicine and eye drops later, my eyes and face were back to normal.
This reaction to cucumbers was a definite first and one I do not intend to repeat ever again. I did have a similar reaction about a year ago with a face mask. My attempts to destress only seem to cause more stress!
6. My Ability to Hurt Myself
While at work one day, I reached down to scratch my hand as you do when you have an itch. I guess my nails were particularly strong and destructive that day because I scratched myself. No big deal, right? If you're looking at the scratch, you may say, “Well, that's a very small, relatively insignificant scratch,” and I think so too. However, I can tell you that what resulted was not small or insignificant. Less than 15 minutes later, my finger began to swell and stiffen to the point where typing (i.e., doing my job) was a bit difficult.
My coworkers took one look at my finger and thought should go to an urgent care facility because obviously this is not a normal reaction. I assured them that this was just another typical day in my otherwise very untypical life. On the bright side, this is a rare photo in which my nails are painted and looking nice!
7. Woke Up Like This
They say that life is full of surprises and my life is full of surprises like this. Oftentimes, I wake up to new marks, bruises, scratches, bumps, lumps—you name it, I've probably woken up with it. This example is one that I found under my eye. I woke up one morning looked in the mirror and noticed this red bump/mark on my face. I can't tell you what I did to myself to get this mark, but I can report that it did go away almost as quickly as it appeared. I'll also sometimes wake up with dark circles under my eyes as shown here as well but again that is generally because I do not have a restful night's sleep.
I wear a Fitbit at night, and I believe my all-time restlessness count was 25 times. While that may not seem like a lot of tossing and turning, it is quite a bit if you typically only sleep for about 5 hours. Thankfully, some nights are very restful because I am exhausted. The older I get my body demands 8 hours of sleep so I will get it even if I must take a nap during the day.
I recently read an article that said that some of the most successful people in the world take naps during the day so if that makes me feel good about getting those zzz's.
8. A Simple Bug Bite
So, I do not think anyone enjoys mosquito bites or getting bit by any insect for that matter. Growing up in the South, I have been bitten many times by many insects, however, I have never had a bite quite like this. This bite started relatively small as most mosquito bites do. It itched, I put some anti-itch medicine on it, and went about my day.
While at work, I noticed it was getting itchier and warmer. I chalked that up to the fact that this bite was under my arm right around my armpit. When I got back to my apartment, I inspected the bite to find that it had grown quite exponentially, so I had to document this to send to my mother. That may seem strange to some, but my mother's a nurse, so I had to share this with her.
My mother was quite concerned (as she always is) and suggested that I document this monster for an occasion such as this article. Oh, the lengths I will go in the name of science and research.
We are all humans. Do not be so quick to judge. Realize that there are conditions that are not visible to the naked eye. Just because someone does not look like they are sick, struggling, or suffering, does not mean that they are not sick, struggling, suffering, or something else.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2020 Sarah Hurst
Sarah Hurst (author) from Tennessee on September 15, 2020:
Thank you so much for the encouraging comment! I really appreciate it :-)
Cynthia Zirkwitz from Vancouver Island, Canada on September 01, 2020:
Wow, a picture really is worth a thousand words! Thanks for this photo essay that perfectly describes how all-encompassing a chronic disease can be.
It is great that you can tie in black humor and, ultimately, accept yourself as a person with serious health challenges doing the best you can, and a gifted, loving, lovable person not defined by the fibromyelgia.