Pain; But You have Make-up, Jewelry and a Nice Outfit On!

But-you-dont-look-sick

A while back, I blogged about using self-advocacy; in that blog it was my experience with a medical professional. One of the items I brought up during that blog, and advocating session, was the fact that I had make-up on, matching outfit, and nice jewelry; even my hair was done up. I said, “I don’t look like I am in pain, do I”? This came to my mind today as I raced to get my outside appearance “put on”, in order to go to yet another medical professional. I began to wonder, “what if I looked sloppy, would I receive more help”? This is a completely unfair situation, one I should not have to even ponder.

There are many days when I am not so dapper looking. However, when I must go out, I wish to look nice. It helps me to feel better. But, would I be taken more seriously if I looked less kempt? I am uncertain, but living with hidden, chronic pain, I think the answer is yes. If I had another, hidden condition, I could look like whatever I desired when out and about. Medical professionals would immediately take me seriously when I entered their office. The general public would still not know I had a condition, or syndrome, no matter what hidden disability I suffered without a visual cue, such as a brace, crutch, wheelchair, or other.

All this pondering leads me to a personal conclusion; when necessary, I must inform those who need to know that I am in pain, despite my looks. Just like a person with a heart condition or diabetes would need to. When I don’t need to, I will take joy in putting on my lipstick, jewelry, and matching clothing. Actually, I will enjoy this when I go out no matter what the circumstances. Where is it written that I must look bad to feel bad?

 

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Fibromyalgia or Chronic Fatigue Syndrome; Both?

Fatigue from Post Concussion/Tramautic Brain Injury

Chronic Fatigue or PCS

 

Cousins, Individaul Syndromes or?

Ever since I was rear ended in 2013, I have experienced fatigue. I sleep much worse than before the accident and I can not handle more than 4 or 5 hours a day of taking care of anything; this includes just sitting and making phone calls to schedule doctors appointments. I always had a bit of fatigue, but this is new to me. I feel fatigued again today, so felt it was time to bring up these two syndromes; separate syndromes or one syndrome.

I found the research article above that has some answers, but not enough. It does assist me in trying to decide what is going on, although my inner jury is still out. I was exhausted for two years after my accident and towards the end of those years was able to blog every day. I know find that more duties, like those doctor phone calls are piling up and the rest of my day is over when I am finished. I can’t handle my prior eight hour days anymore. I stay in bed for half the day. Just blogging this today is hurting my arms, wrist and fingers, along with exhausting me and causing a headache.

I finally have a clear enough mind, I suffer from some mild post cognitive issues after the accident, and am pretty sure that something tipped in my immune system during the accident and I do suffer fatigue. I felt it was my body healing for many months. It could also be brain fatigue, not to be confused with brain fog, but does it last forever? I don’t know the answer to this. I do know I will be starting a group for brain damage soon, so that should give me further answers.

Whether it’s my brain fatigue or chronic fatigue syndrome, I am tired every day. I am leaning towards the side of having both at once. Any of my peers who are wondering about their exhaustion, I hope this short rant assists you to begin to draw conclusions about what you need to do on your path to wellness.

Interesting Research Finding; Persons with Fibromyalgia have Smaller Nerve Fibers

livingyournewlifewithchronicpain

2013 Research on 41 Participants with Fibromyalgia Found Smaller Nerve Bundles at the Periphery of Body

I thought this was interesting. As the article states about this research, it does not explain all the symptoms, but, it may have some merit. It also discusses an immune or pathology cause not yet found. And, of course, it brings back the chicken and egg question; personality types and psychological affected reasons. Despite this aspect of the questioning by the authors, give it a read.

Updated 1/25/2016:

I messaged a peer about keeping positive as fibromyalgia is not progressive; doesn’t lead to being wheelchair bound for instance. I received a message from another peer that she is somewhat wheelchair bound due to small peripherary nerve pain. This took me back to this quick post and I posted another, similar, article in response to her, with my sympathies. While this is an interesting find…

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Yes, People with Chronic Pain/Fibromyalgia do Work

livingyournewlifewithchronicpain

new good spirits new good spirits

working and firbo assistinng huricane katrina survivorsWorking while surviving and planning to live Well with Fibromyalgia is not uncommon. I have worked, volunteered during Hurricane Katrina, spent 8 years in college and then two years in graduate school. During those last two years, I interned 24 hours a week; with a full schedule at the university. I was in pain and many days it was a struggle. Once every other month I had to call in and tell them I was unable to come in as my pain level had increased. Usually, I was able to cover most of the work from home, otherwise I completed  the next day. It was an interesting experience to work with my fibromyalgia syndrome; in many ways.

I never had a supervisor or coworker come right out and tell me that I was incapable of performing my job duties. I am actually a very competent worker, or was then. Most coworkers were considerate about…

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mini-miracles

Hi Barbara,
I reposted to this to my blog as I like that you are showing our ability to be positive despite all our struggles. I keep reminding myself, and others, that there are other medical conditions that are also just as bad. Yes, we do have a medical problem that sucks, but we are not progressing to losing limbs, becoming wheelchair bound, or dying. It may sound like small gifts, but, to me it is a gift.
Lucinda

Gingerfancy Photography and Reflections

It’s so easy to get into a rut this time of year. The January Blahs, I call it. Grey, dreary skies, the post-holiday blues, temperatures dipping below zero, some of the shortest days of the year (yes, longer than in December, but not by much), nasty, dirty slush everywhere–all of these things add up to one crummy mood. So I just trudge along, each day blending into the next.

And in the process, I completely miss the beauty in the world because I am wandering around with blinders on, unable to see the miracles happening all around me. Because there are miracles, and beauty, even in January. We just have to pay attention.

You can become blind by seeing each day as a similar one. Each day is a different one, each day brings a miracle of its own. It’s just a matter of paying attention to this miracle.–Paulo Coelho

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