Fibromyalgia and chronic fatigue syndrome can affect every area of your life, right down to the most ordinary tasks of daily life. Sometimes, you might be surprised by how difficult “ordinary” things have become for you.
After living with this illness for 20 years, I’ve identified 4 everyday things that frequently become difficult for us because of our many symptoms. A lot of people think they’re the only ones that have these kinds of problems, but you are definitely not alone!
It’s such a basic thing – you get up, shower, style your hair, and make yourself presentable before you go out into the world. Right?
For us, it’s not that simple.
First, the shower: It gets hot, which can make you dizzy and activate your temperature sensitivity (which in turn can lead to more symptoms.) The spray of the water, for many of us, is painful to the skin at any temperature, thanks to a symptom called alodynia (pain from typically non-painful stimuli). Standing for that long and using your arms to vigorously scrub your hair and body can lead to tired, achy muscles. A lot of us opt for baths, which eliminate many of the problems.
Then there’s styling your hair. Holding your arms up to brush, blow dry and flat iron is hard on the arms. For the heat sensitive, styling tools can make you feel like you’re cooking, especially after a hot shower. In some of us, they can also trigger excessive sweating, which can undo all that hard work just minutes after you’re done. It can do a number on your makeup as well.
I RARELY wear makeup, and when I do, it’s a 5 minute routine MAX, and I put it on while sitting down on the couch. I will either throw my hair up in a bun or leave it to air dry curly – I very rarely blow dry or do anything more to my hair, I just don’t have the energy or the strength.
Waistbands. Bra straps. Elastic in socks. Rough fabrics.
Tags. These are all things that can cause a lot of pain because of alodynia. Many of us have to tailor the way we dress to avoid this symptom, or to at least make it less of a problem.
Temperature sensitivity can play a big role here, too. What starts out as a cozy sweater on a cold day can become a sweltering nuisance if the heater’s set too high. A cool breeze can quickly make you regret a pair of shorts and a light cotton shirt as well. For those with both hot and cold sensitivity, deciding what to wear, and enduring the ramifications of the wrong choice, can be extremely unpleasant as you either freeze or overheat, or alternate between the two.
For those that know me, my basic “uniform” are comfy lululemon stretchy black pants, a loose fitting cotton top, and some sort of sweater overtop in case I get cold. In the summer I wear comfy flip flops or birks sandals, and in the winter Toms slip on shoes or a comfy pair of Ugg boots or leather boots. In the summer I also enjoy living in comfy cotton dresses and throwing a jean jacket overtop for when I’m in the air conditioning or in a breezy area outside. My wardrobe is VERY basic for that reason!
Talking on the Phone
We don’t normally think of a conversation as a strenuous mental activity, but when you have cognitive dysfunction (brain fog or fibro fog), it can become one.
All social interaction takes energy, and when you’re not face-to-face, it takes even more.
A big part of communication is body language, and you lose that when you’re on the phone.
That means you have to focus more. For most people, it’s not noticeable. For us, though, it definitely can be. Our foggy brains might not be up to the task at times.
Also, when you’re on the phone, you may be distracted by things in your environment that the other person is unaware of. Many of us have problems multi-tasking, so your brain may essentially block out what the other person is saying while your attention is on something else. Then you find yourself confused as to where the conversation has gone, which can be frustrating and embarrassing.
Many of us have problems with language, especially when it comes to finding the right word for things. Again, it’s frustrating and embarrassing, and if you know you’re having a bad day, communication-wise, it can be easy to stress over the problem and make it worse, or at the very least make the conversation unpleasant for you.
And then there’s they physical aspect. Holding a phone for very long can tire your arm, or your neck if you’re clenching it between your jaw and shoulder. I opt for wearing earphones or putting the person on speakerphone.
I have a hard time with talking on the phone, and most people who know me well know this about me. Bart rarely calls me, and when he does, he knows it’s normally going to be a short conversation. My close friend Sum will call me, and she’s aware of my issues, so sometimes she will FaceTime me which is an amazing option (as long as I don’t feel self conscious about what I look like or am not running around the house doing laundry, cleaning, etc. lol).
Brain fog can be a major problem when you’re behind the wheel. Some of us periodically forget where we’re going or how to get there. Even worse, we may become disoriented and not know where we are.
It’s scary when this happens and can lead to an anxiety attack, which makes the situation even worse and can increase other symptoms.
Some of us also have trouble paying attention to the myriad things that we need to while driving. We may not be able to process all the necessary information to be safe on the road.
A small fraction of people with these illnesses stops driving completely. Some may have to limit their driving to familiar places, while others are okay most of the time but choose not to drive on especially bad days. It’s a personal decision, but one that we need to be aware of to protect ourselves and others.
As you evaluate your driving ability, it may help to get input from friends and family members who’ve ridden with you, as they may have noticed things you didn’t.
One of my friend’s with fibro has decidedly to stop driving altogether, opting for her husband to drive instead, or walking / taking public transit. I have gotten into a couple car accidents in the past and these were most likely due to my fibro issues. I am VERY careful with driving now – if I feel like I shouldn’t be, I won’t.
Knowing Your Body & Adapting
The reality of having a chronic illness is that you may need to make some changes to your daily life. By identifying the things that are difficult for you, you can modify or eliminate them so they take less of a toll and leave more energy for things that are a higher priority.
A key to adapting appropriately is paying close attention to your body and the patterns of your illness(es) and taking an honest look at your lifestyle. It has taken me close to 20 years to do this, but I think I have it all down pat now!
Here are a few photos from the last month since I have been completely MIA – sorry! Life has been hectic lately. Classes are finished on June 23 (WOO!!!!), then I take 1 more class, then finishing my 14 case studies, then study for my board exam, and will be OFFICIALLY done school on August 25! CANNOT WAIT!!! Come September-ish I should be a Registered Nutritionist! The countdown is on now, in the home stretch!