Tuesday, May 10, 2011


May 12.
It's Fibromyalgia Awareness Day.
Let's go for a walk.

We're invisible and we wear our cloak of invisibility like a dark shroud around our shoulders. It's distinctively different from the smile that masks a life full of pain. On the one hand we treasure our invisibility because we wouldn't want the outside to look like we do on the inside. On the other hand, we are not to be believed because we just don't look that bad.

To anyone else, that is.
After all, what is pain? 

It's no big deal, really. We are supposed to suck it up and not be such a wuss. Pain equals weakness and weakness is hated. For those of us who were Type A squared, the loss of control that has accompanied this illness has almost been as devastating as the illness itself. To top it all off, we don't know if we'll ever get it back. This illness takes a vital, ambitious and, excuse the language, balls to the wall woman and turns her into something that can't remember why she walked into a room. Everything that used to be precious to her life; her career, her mental acumen, her body and her confidence in herself and her abilities, are now a vague recollection. Even when you can remember all it does is make you cry for the person you used to be.

Can anyone understand that the tears we cry are not only for pain but for the endless frustration that we feel? We have a myriad of symptoms that are dismissed by doctors. Medications are hit and miss and most of them have side effects that are worse than the pain we feel. We've tried anti-depressants and anti-seizure medications. We've tried the opiates. We've tried muscle relaxers. We've tried vitamins, acupuncture and massage. If we complain too much, we're neurotic. If we try to keep it too ourselves, well, we must not really feel that bad.

How do you tell someone that you really miss the life you used to have? A life that was pain free and a life that could be lived without worrying about the inevitable crash to come? How do you express your pain in a way that's not dismissive and not pitied, but believed? How do convey the fact that you're not wallowing in your pain but that it is your reality and you're really doing the best you can to live with it?

How do we ourselves understand the new crop of symptoms that seem to appear daily? For some it's sensitivity to smells, noise or chemicals. For others it might be a mysterious ache or pain that suddenly appears in a different part of our body. How do we know what is going on in our bodies? We can't have a doctor on speed dial and we fear looking foolish, even to ourselves. Our body seems to be betraying us and we just can't seem to get a handle on it. We feel overwhelmed and then feel stupid because what we used to handle would cause most people to burn out quickly.

We feel isolated even around our dearest friends and family. Chronic pain loves to play with our  emotions and it plays us like the virtuoso that it is. We doubt our bodies and ourselves. The confidence that we had with life is now diminished so that we don't even recognize the person we've become. Sometimes even we believe the bad press;  think we are whiners and if we'd just get up and move around we'd feel better. 

Our brains are in a constant state of fog. The overpowering fatigue and pain. Imagine living with the worst flu you've ever had and then imagine that it NEVER goes away. Year, after year, after year. How do you think you'd feel given that life sentence? Yes, there are good days but good days mean the edge is off the pain and fatigue. It never really goes away. Your body has limitations and we've learned to listen.

When will researchers try to figure out why the switch was flipped?  I feel that this is a neurological disorder. Where others feel a touch, we feel pain. There is too much Substance P (this heightens the awareness to pain) in our spinal fluid. We have abnormally high levels of glutamate (and excitatory neurotransmitter) which means our neurotransmitters are on overdrive. Our internal amplifier is turned up full blast.  In other words, THERE IS SOMETHING WRONG.

Let's also not forget the sleep disorder that is also one of the lovely symptoms of Fibromyalgia. Alpha wave intrusion. The nice, sweet sounding term for our "awake" brain waves that keep saying hello to us in the middle of the night so that deep, restorative sleep is an impossibility. The fatigue we experience is overpowering, however, we cannot find the sleep that our body so desperately needs. Our brains will not allow it.

There are lists and lists of symptoms. There are the intestinal woes, thyroid and other hormonal issues. Even I look at the list and think it's no wonder people think we're crazy. I haven't even touched on the emotional issues that are inevitable when you live with chronic pain. 

It's so difficult to find the acceptance we crave. On one hand we do accept our physical and emotional limitations but one the other we keep fighting. We are the wounded warriors that want to fight the good fight until this illness is defeated. 

But sometimes we can't.

Sometimes it just hurts too much.

And sometimes we're just too, too tired.