Who Cares?

Originally posted on Prohealth.com on October 8, 2016

whocaresWe have all done it. We have lied or told half truths when asked the question, “How are you?”.

How many people in our lives do we share our true level of pain we are feeling every day, physically and emotionally?

As I walk down the school hallways every day to refill my water bottle I pass a Teacher who always says “Hi!” and asks “How’s it going?

I smile (a forced smile), replying “Hi!, Good.”

I caught myself in my head the other day saying “Liar, Liar Pants on Fire”. I am anything but good.

When asked how are you by a co-worker or a store clerk it’s more of a common courtesy question. Am I being rude by not responding when asked how I am doing? Or is it okay, since they are not asking for real because “How are you?”, is simply a greeting not an invitation to unload your daily list of complaints.

Can you imagine if I replied, “My neck and back are causing me a new intense pain. It hurts to turn my head. It is causing headaches. I can’t get the right balance between not able to go to the bathroom or having to go to the bathroom ASAP. My right hand has started hurting when using scissors, etc. My knee feels like it is going out every time I try to stand. I had to be helped into the bathtub this weekend.”

If we began answering the truth how long would it take for that person to stop asking?

I get it. I have known people who tell everyone absolutely every negative detail in their lives. It gets old.

What about our family or the people that live with us?

Eventually for many of us those that we live with stop asking. Maybe they just assume they know the answer already. It doesn’t mean they have stopped caring.

My daughter is 16, she is busy surviving high school. I don’t expect it of her.

I mentioned to my husband awhile ago that he doesn’t ask me how I am feeling any more. He said, “I don’t have to, I can tell by how you get out of the chair and how you are walking.”

Ok, so he sees it but that really isn’t what is needed.

The past few weeks I have acquired new health problems and a very high level of pain. It has kept me from doing things that I would normally push through and has brought me to tears daily.

Then just this weekend we were hosting a cross country bon-fire and I was asked, “What do you need help with?” I muttered under my breath, “Just end it.”

It has crossed over the line of just physical pain and is now affecting my emotional well-being.
I am to the point where I have to let the truth out because if I keep answering “fine,” I will find myself on the road to depression.

Are we more likely to open up about physical pain than when we are feeling depressed?

I think it is easier or more acceptable for someone to comment “my knee has been killing me” than “emotionally/mentally I am …”

What if someone asked, “How are you today?”, and we replied, “I want to jump.”

Can you imagine how others would react? Instead, we answer fine, good or in my case on crummy days, “peachy”.

What if there is no one you can tell the whole truth? No one to listen to you cry? Crying alone is one thing but crying in a room with others without any reaction is being alone.

Often we stop sharing the truth when we answer because it is easier for us. It’s much harder to share our long list of ailments. We want to be polite. We don’t want to ruin the other person’s day. We don’t want to be “a downer” or “negative.”

Those living with chronic pain such as fibromyalgia often become isolated. It is so easy to focus on our pain. It’s easy to feeling alone when you can’t talk about how you are really doing.

Thank goodness for support groups where we can share the truth of how we’re really feeling.

Everyone needs someone in their lives where they can share the truth to the question…

“How are you.”

What is a Fibromyalgia Flare?

A common definition for a fibromyalgia flare (or flare-up) is a temporary increase in the number and/or intensity of symptoms. Generally, the flare begins with pain and fatigue that generally increases with time. Other symptoms one can experience are “fibro fog” (cognitive dysfunction), digestive issues, and poor sleep.

Doesn’t sound too bad does it?

I do not know if someone who has never experienced a flare will ever understand a it no matter how it has been described to them. It is one of those things that you have to experience in order to truly understand how badly it feels. However, I am going to try.

First, I want you to understand that those of us with fibromyalgia are like snowflakes. We do not develop fibromyalgia the same way, have the same comorbid diagnoses(“evil-sidekicks”), or are able to treat our symptoms/conditions in the same way.

I will describe what a “normal” day feels like for me. I wake up still tired after 9-10 hours of being in bed(never feeling refreshed), experiencing body stiffness, pain, and tenderness in various parts of my body. I take my morning medicine, and within an hour (using a scale of 1-10), my pain is a 2 or 3.

I work 7 hours a day as an ELL paraprofessional. I work with children that English is their 2nd language. The great thing about my job besides the kids, is that I sit and walk all day long. It is a great mix of resting and moving my body, which keeps my pain and stiffness levels low. Once I get home, I lie down on the couch, and I take an hour nap, so that I can get through the rest of the day. As the night progresses, the fatigue and pain increase.

How does it feel for me to be in a “flare up”? I have been sitting here trying for a very long time to find the right words so that you will understand.
“Normal” fibro pain feels like you have the aches when you have the flu.

Good days feel as though when someone or your clothing touch you, it feels like the worst sunburn that you have ever experienced. My pain during a flare is beyond a 10. My arms and hands feel like the nerves are pushing to jump out of my skin.

The pain during a flare is indescribable. Along with the aches in my joints, my myofascial pain syndrome kicks into overdrive. The sharp pain feels like I am being stabbed repeatedly by a very sharp knife. My leg not only feels like growing pains, but sharp pains that start at my lower back, go straight down the sciatica nerve, through arthritis in my knee and down to my foot.

I sleep even less than normal. Every few hours I have to get fresh ice packs, medication, topical lotion, and heating pads. Anyone who experiences this kind of pain and exhaustion, knows how emotional you become after dealing with it for any length of time. Then, it is like a barrage of emotions, and I am a mess! There is E-X-T-R-E-M-E anxiety because I feel so out of control, as well as sadness, fear, and guilt, to name a few.

There is never any rhyme or reason. It could be the first day of a flare, or after I have been dealing with it for days. I am so overwhelmed by the pain and fatigue, that my thoughts become muddled. Then, my tears start. My uncontrollable tears.

Stress and emotion increase the pain levels, and unless you can break it, the flare can last for days. It becomes a vicious cycle. I know what I need to do to break a flare cycle. I coach others in what they should do, but during the moment that I am in, I can not process what I need to do.

I can remember a few years back when my flares would last for up to a week at a time, and I was experiencing one or a more a month. I was driving home from my job, because I could no longer stay at work that day. I had been in a severe flare for a week and I wanted it to be over. I prayed all the way home that a semi-truck would hit my car. I know that isn’t a healthy way to think, but when you are in that amount of pain and fatigue for days, or even weeks, you can no longer think clearly.

I am unable to do things that need to be done at home. I feel like a failure as a mother and a wife when I am in a flare. I can’t seem to do anything other than cry or slip into a deep solitude. I need tremendous support to reach out to my friends at this time, but yet I seem to push everyone away and enter into my own darkness.

Last week, my daughter had friends over 2 nights in a row to study for tests. My bedtime is usually 8:30 – 9:00. The kids were here until 10:30 and I felt that I shouldn’t have gone to bed until after they have left. The less the sleep, frustration over a schedule that keeps changing, and the weather changes sent me very quickly into a flare. I woke up this past Friday and knew. The pain increased as the day went on. The tears started, and I had to come home from work 2 hours early. I came home took some meds and immediately fell asleep on the couch for a 2 hour nap. Today is Sunday. I am still recovering but the worst of it is over.

I have been very lucky that since I changed jobs 3 years ago, the amount of flares that I have dealt with have decreased immensely, and the duration of them are now very short.

Before I started writing this blog, I asked my friends how they describe “Fibro Flares.” I wanted the reader to hear how others describe it to their family and friends. Here are some of the reasons that I received:

“Pummeled by pain,” “tumbled in the dryer,” “awful just f’n awful,” “like I have the flu permanently, and I lost an MMA match,” “a good day is like the flu and a bad day is like my bones are breaking and I’m being beaten by a bat,” “at the start I use to say I felt like my muscles were being eaten away (like extreme lactic acid buildup) I would say like you’ve been hit by a train and nothing relieves anything!” “like I was thrown off a cliff,” “nerves on fire,” “joints frozen,” ”flu type body aches is a good way to explain it to non-fibro folks,” “I think it’s the only way they can come close to getting it without becoming severely injured,” “sneaky, devious, invasive and miserable F’rs👹😈😭!!” and “feels like every nerve ending in my body is on fire.”

If one person reading this understands enough to offer empathy and help to their friend or family member during a flare up, then the mind struggle writing this blog has been worth it.