SIMPLE TASKS ARE NOT SO SIMPLE

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Normal every day activities that most people don't even think about, cause pain and struggles for those with fibromyalgia and other chronic invisible illnesses.

Submitted: September 14, 2014

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Submitted: September 14, 2014

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by Rev. Jeff Hagan, DCE, DMin, (ThD)

 

Introduction:

Fibromyalgia, Chronic Fatigue Syndrome (CFS), and other similar “invisible illnesses” involving chronic pain can affect every aspect of your life, all the way down to the most ordinary actions of routine daily activities. Things that have become second nature to others are extremely difficult for those suffering with these illnesses.

 

Through suffering with these illnesses myself, research, study, and conversation with fellow sufferers, I've come up with four everyday activities (although there are many more than that) which often become difficult for us because of the amount of, and severity of, our symptoms. Many people think they're the only ones having these kinds of problems (after all these things should be so simple, right?), but I guarantee you that you are not alone.

 

Getting Ready:

It used to be such a basic thing – you wake up, get up, shower or bathe, dry and/or style your hair, and make yourself presentable before you step out of your door and face the world. But for us, it's no longer simple. It's not simple at all.

 

To start with, let's look at the shower experience: The water gets hot, and the water gets cold, both of which can easily make us dizzy and activate our temperature sensitivity (which can then lead to additional symptoms). The spray of the water, for a lot of us, is actually painful to the skin regardless of the temperature, and we can thank a symptom called “allodynia” (pain from normally non-painful stimuli) for that.

 

Also, standing for that long and using your arms and shoulders vigorously to wash our hair and body leads to exhausted, achy, fatigued muscles and joints. In fact, after showering many of us need to literally go and lay back down, some even needing a nap.

 

Getting Dressed:

(The first sentence of this section is paraphrased and adapted from an online anonymous article) – Waistbands, bra straps (for ladies - at least I hope just ladies), the elastic in socks, rough fabrics, and size or laundry care tags are all things that can cause a lot of pain due to allodynia. Many of us have to dress in ways that will avoid these symptoms, or at the very least, make it less of a problem.

 

For instance, I almost always wear loose shorts and big T-shirts. This is not to make any kind of a fashion statement (clearly), it's just that these are the types of clothes that are best for me and least aggravate my symptoms. In fact, if I'm in my home I don't wear a shirt because the material often irritates the nerve endings in my skin.

 

Temperature sensitivity is also something that needs to be kept in mind here. What might start off as a comfy sweatshirt on a cold day can end up being a sweaty pain in the butt later. A little bit of a chill in the air can cause your muscles to stiffen and make you regret throwing on those shorts with that tank top instead of pants and a shirt. For those who have both hot and cold sensitivity, figuring out what to wear, and suffering through the consequences of a wrong choice, can be very uncomfortable as you either get chilled or overheat, or even go back and forth between the two.

 

Getting Social:

Most people don't consider a conversation to be a strenuous mental activity, but when you have cognitive dysfunction (fibro fog a.k.a. brain frog), it can certainly become one. “All social interaction takes energy, and when you're not face-to-face, it takes even more.”

 

A large portion of communication is done by the use of body language, and you lose that when you're on the phone, texting, or online. That means you have to concentrate more. For most people, concentrating during a conversation is something they don't have to consciously think about doing. But for us, it can definitely be noticeable not only to us, but to the one we are speaking to as well. When we are experiencing fibro fog our brains just might not be up to the task of basic conversation.

 

Also, when you're on the phone or online, you can be distracted by things around you that the other person is not aware of. Many of us have problems multi-tasking, so your brain may basically block out what the other person is saying while your attention is diverted to something else. Then you find yourself all confused as to the direction the conversation has taken, which can be annoying and embarrassing.

 

And we also have the physical aspect that cause problems. Holding on to a phone for any length of time can tire out your arm and make your arm, neck, and shoulder burn and ache. It can also cause pain in your jaw as well. Or if typing online, your arms, wrists, forearms, and shoulders can go numb, fatigue, and ache.

 

Getting Out:

Fibro fog (brain fog), as well as the side effects of medications we have to take for our illnesses, can be a major stumbling block when you're driving a vehicle. With fibro fog some of us occasionally forget where we're going or how to get there. Even worse, it's not uncommon to become disoriented and not even realize where you are. This can be extremely frightening and most likely will lead to an anxiety/panic attack, which magnifies the situation and then exasperates other symptoms.

 

Sometimes it's difficult to simply pay attention to the variety of things we need to do when we are driving. We may not be able to process all of the required information fast enough to be safe while on the road.

 

A small percentage of people with these illnesses have to give up driving altogether. Some have to limit their driving to familiar places and close distances, and others are okay most of the time.Those who are okay with driving still usually have to plan it around their medications and/or symptoms, others choose not to drive on particularly bad days. It's a personal choice, but one that we need to be aware of to protect ourselves and others. And it's another factor in the ever growing list that can cause us to feel “less than.”

 

Conclusion:

The reality for those of us with a chronic, invisible illness is that we are going to need to make some changes to our daily routines. By figuring out things that are troublesome for you, you can change, reduce, or get rid of them so that they take less of a toll on you and leave more energy for things that are higher on your priority scale.

 

The way one adapts the best is by paying close attention to your body and the patterns of your illness(es) and taking an honest look at your lifestyle. You know your body better than anyone else so listen to it.


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