PFAM- The Stress of Having a Chronic Illness- Fibromyalgia

Fibromyalgia Awareness

Fibromyalgia Awareness (Photo credit: Kindreds Page)

When you have Fibromyalgia stress is part of your life, it’s your face staring back at you next to the definition of “stress” in the dictionary. Wait. What? What were we talking about? I don’t remember, it couldn’t have been too important. It doesn’t matter. I had a good morning, the pain in my arms only woke me up twice during the night and it wasn’t bad at all getting out of bed if you don’t include the dizziness that happened when I tried to get up.  I actually was able to go out and do an errand, even two. My energy level was okay for an hour and a half to two hours! Then, the boat that is my life, sank like the Titanic. There were no survivors. That always happens. I should get used to it but I can’t. Maybe it’s Fibro Fog or pure denial but when I crash in the afternoon, every afternoon, I crumple like a rag doll and need to lie down. I can barely make it up the stairs on my own, the stair rail helps me up as I plod along slowly. It happens every single day. Maybe Fibro Fog and forgetting are better than acknowledging my sad, interrupted life.

My stomach aches, It’s probably IBS, or irritable bowel syndrome as we Fibro patients know, we get pain THERE too, it’s a classic symptom. Stress only makes it worse, where did it come from? We are not exactly sure, some say it’s from Fibromyalglia, some say it’s a gastrointerology disease, other say stress. No matter what, we can’t win.We can run to the bathroom with stabbing pain or basically not go at all. Pain all around. You can’t help it, there is nothing you can do but wait it out. Just an added bonus of Fibromyalgia, just one more question mark that will never be answered. It limits where we can go and when, which in itself is stressful. We have to plan or not plan at the last moment. Friends who understand call in the morning and ask “are we still on?” or “let’s see how you feel in the morning.” For every friend like that, there are two friends plus family members thinking or saying, “you should just exercise/eat gluten free/lose weight/gain weight/go holistic/ try acupuncture, get a massage etc. They are so strong in their feelings and I know it is out of love but I have stopped trying to defend myself and just let them talk as much as they want. Since it’s the 100th time, I don’t fight anymore, now I just pretend to listen.

This insidious illness has not only interrupted our lives, the lives we once had, but for me, divided it into two. Before Fibromyalgia and After. We mourn our old selves to a point, some people still hope for a cure, but I don’t. I need to focus on my new reality, the pills, the pain, the realization that I cannot do many things that I was able to do in the past. That sometimes I feel like half a mother, half a wife, that I have the energy of a cockroach, let me correct that, the energy of a nearly dead cockroach because those things can be feisty.

I am not feisty anymore but I once was. Those were the early days when I could describe myself, without hesitation, as HAPPY but also young. I remember saying that, though conjuring up the feeling now is so much harder. Luckily, when I had my children I did not have Fibromyalgia but they don’t remember all the running around, playing, swinging and rough housing on the floor we did because they were so young. That to me, is heart breaking. Ask them now, as young adults and I’m sure they will remember “Mommy is in bed, she doesn’t feel well” or “Mommy is sleeping.” Ask any mother who has Fibromyalgia if that’s not the tipping point for her. It was for me.You want to help your children until you become old. Fibromyalgia makes you old, makes you feel old and useless a good deal of the time. The stress of life continues and it waits for no one especially us. There’s not only physical pain with those of us with Fibro but emotional pain too. We are not who we used to be. Does anyone ever think of that?  We are half of who we were. People with Fibromyalgia don’t get a “do-over” we don’t even get a chance.

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“MTV, Teen Cribs” ( or I Want To Throw Up)

I actually WATCHED a show on television  (I couldn’t make this up if I tried) where teens show off their, mega, opulent, oversized, disgustingly big rooms/suites. The suites are housed in super big houses, near billiard rooms, bowling alleys and ice skating rinks. Seriously. No joke.  I am both fascinated and nauseated by this show, mostly nauseated. Okay, definitely all nauseated and totally disgusted.

The viewer is welcomed into the homes of these super- rich teenage kids and their ridiculously over indulgent more rich than rich parents. I kid you not. I have never seen anything like this in my life and I hope never to see it again. Once, twice was enough; more than enough. Kids have aquariums based on the movie Finding Nemo; they have home theaters, fully stocked concession stands  arcades, spa rooms,  backyard jacuzzi spa and slide sections so that “even when it’s snowing we can still go in.”  They have their own grotto, in case you were worried. Oh look, how quaint, they are making home-made pizza in their own pizza oven outside situated next to more grills than I could count. We’re not talking English Muffin pizza’s here.

There were hockey rinks, soccer fields, a gym with a working scoreboard. What house is complete without one? They have their own performing studios, and an “every day is a holiday” theme so they can keep the Christmas tree up all year-long. I’ve seen a chair museum in place of a dining room table,  psychedelic, modern, artistic mansions, no MANSIONS. These homes are described by their parents as “having a place where we all feel comfortable.” Give me a break.

This disgusting show of über opulence is so crude that over the top does not quite describe it. Over the top is an understatement. I actually had to text my teenagers to see if this was a real show or if it was made up?  Apparently, it’s real. Real if you live in a fantasy land, on another universe, in another galaxy. After watching this show it seems that Michael Jackson’s Neverland was nothing more than a quaint and cozy little shack.

Is this the standard we want our children to aspire to? Does the plethora of material riches, I mean crap, make them any happier? Don’t even answer that! What are these parents THINKING?  I’d be embarrassed to show off a ridiculous  mega-mansion like any of those shown. I would be ashamed, and I should be. So should they.

Kick these families out of their glamour galaxies, show them the real world, where most of us can barely live, can barely make ends meet. As for the teens? Kick them out of their go carts, scooters, Segueways and disco ball rooms, and hand them a book. A book about the real world, unemployment, financial troubles, poverty. Real people.

After not being able to watch another second of this show, I was grateful to find  a show on NBC about how a community helped a special needs family and their mom. Which show would you want YOUR kids to watch? “MTV Teen Cribs” or “America Now, A Circle of Helping Hands?” You make the decision, you do the math.

After accepting that “MTV Teen Cribs” is going to stay on television, all I can seriously hope for is that these RICH families do a lot for charity. That they give to those less fortunate than themselves (which is probably 99.9 percent of the world), it may sound idealistic but it’s the only hope I’ve got.