REWIRING THE CIRCUITS

My body is like the computer.

The hard drive isn't functioning.

I've had an interesting time lately. Ever since those fricking epidural shots my body has had a mind of its own. Every coping mechanism that I have used to control the pain hasn't worked. I had become a master of control. I even congratulated myself on that fact.  Even though the pain was ever-present, I had coping mechanisms that I would use to exert some sort of control over my body. Anything and everything would be tried and tested so that the days spent curled up in a fetal position would be minimized. I know that I would always have a level of pain but I thought I could control the levels. Control has always, always been my issue.

And I don't like being out of control.

Stupid me.

I haven't been sleeping real well. I mean, I do sleep but I am in that awful shadow of sleep. The one where you know you're asleep but it feels like you're awake? I know we have sleep issues but lately they're more pronounced. Why is it that all the articles on sleep fail to miss one important issue? If we lay in the dark and have nothing to distract us from the pain we will not drift off into blissful slumber. Instead, we will lay there in torture until we get up and do something else or have something else to help us pass the time.

Lack of sleep equals more pain and I understand that. Why do we have the alpha waves intruding into whatever possible sleep we might be able to get? Is the issue in sleep; not the actual sleep per say, but the ability for the heart rate to slow and the ability to breathe deeply enough to achieve that REM sleep that we need to replenish and restore our body?

There is an imbalance in the autonomic nervous system. 

The autonomic nervous system controls our unconscious bodily functions such as heart rate, breathing etc. There are two subsets: the sympathetic and parasympathetic. The sympathetic nervous system controls the flight or fight. Our bodies don't respond real well to stress and our cortisol levels are usually in overdrive as well. The parasympathetic system controls the quieter bodily systems such as digestion. So if this holds true, the sympathetic system gets us ready for flight and the parasympathetic gets us ready for rest. One or the other predominate inappropriately at inappropriate times.

We are screwed because neither one works.

We can't stop the flight and we can't rest.

Is it any wonder that we have pain?

So I guess when they find the "off" switch for the flight or fight and the "on" switch for the rest part of our brain we'll be fixed.

If they can flip the right switch.

MORE THAN A FEELING

Am I more than this illness?

There are days I'm not sure.

This is one of them.

Who was I before chronic illness? I know there were definite parts of my personality that have disappeared. I try hard to separate the two because it has been so long that I'm not really sure how to do it anymore. 

So who am I?

I'm still a cynic. I don't think that part of me will ever go away and I wouldn't want it to. That part of me keeps fighting the doctors who want me to just slug down a few pills and go away. The cynic that hates the invisibility and yet embraces it. The cynic that questions every thing and every one. The cynic that continues to look at this mysterious illness and that knows something is missing. 

Well, funding and research is missing but then again, when won't a few hundreds help anything?

Talking about hundreds, I'm a great shopper. That part of me probably won't change either. There is something so comforting about shopping. I don't care whether it's a grocery store, vitamin store or Nordstroms. Well, let me take that back. I do care whether it's Nordstroms because aside from Costco that is my favorite store. I remember the shoe sales with such fondness. Their anniversary sale is my favorite time of year.

I really don't think you can have too many shoes.

Well, at least I didn't think that. I look in my closet and remember the good old days. Days when I could throw on real high heels and run in them. I look at shoes with high platforms and remember the 70's. Remember those shoes? History really does repeat itself. I look at jeans with tears in the knees and laugh. Just looking at some of the clothing is crazy. 


Let's go back to the cynic. My sense of "snark" would come out constantly but frustration still takes over. I didn't have a lot of patience with stupidity before..... let alone now. My own stupidity makes it even worse. I get very frustrated with the fog. I hate it that I have to reread almost everything to make sure I'm getting it right. Even then, I'm not sure that I am. 


I want to think of myself as the same healthy woman that ran around with 4 inch heels. I'm still a computer geek who rubs her hands when I've been too long on the computer. I'm still a photography, movie and music buff. I'm a reader that finds it's a little tough to remember what I've just read. Most of all, I've had a tough time accepting that this is chronic. There are days that I look in the mirror and "I get it" and there are days that I don't. I run hot and cold and I swing to both ends of the spectrum. I guess what I'm trying to say is that I don't know who I am without Fibromyalgia. It sneaks into every part of my life. I don't try to let it but it does. 


Because the fatigue affects what I can or can't do for the day it has pushed its way in to my hobbies and career. Because the pain is ever-present on some level every day it has pushed its way in to the things that I love to do. For example, I found that Fibromyalgia had pushed its way into holiday cooking. I have paid for the desire to push past the pain and cook a holiday dinner. 


No matter what I say or do the pain and fatigue are the twins that want to accompany me in everything that I love to do or be. 


I can ignore them but like a two year old, the twins tug at my sleeves to let me know that they want attention.....AND THEY WANT IT NOW.


I just especially love it when the twins throw a doozy of a temper tantrum and refuse to stop until I give in and let them have their way.


So I'm still "me" with everything that I love to do with a healthy dose of Fibro thrown in for good measure.


Snarky, impatient, little old me.




**I forgot to add that this will be part of the blog carnival. Diana Lee at Somebody Heal Me graciously hosted this. Please stop by her blog and like her page on Facebook.

LAY ME DOWN ON A BED OF ROSES

Ow, Ow, Ow.

A bed of roses sounds good right now.

Not what I got.

Ever since I got the epidural injections I've had a difficult time getting a handle on the pain. It not only didn't help the pain but it actually made the symptoms worse. For some reason the pain is just not going away.


Is it the injections or is it a doozy of a Fibromyalgia flare?
I wish I knew.


I'm trying to continue the movement. I know that it helps but, that too, has been a struggle. I go back to the pain management doctor tomorrow and I'm going to address the increase in pain. It's a delicate balance. I've been on the same level of pain medication for 5 years. I've never increased it because I knew that I'd never be out of pain. All I wanted was to take the edge off and bring the pain to a manageable level. Now, for the first time, I'm finding that what has always worked for me doesn't work anymore. 


I know the medication is monitored and very controlled. I'm a little hesitant to ask for a step up in dosage. I'm hesitant on a couple of levels. First, because of the very nature of the medication, I've never wanted to increase it. Second, I'm afraid that the doctor will refuse my request. It's a real complex situation and I'm not sure about it. I truly do need to get a handle on the pain but do I want to increase this medication? 


I don't know.
Maybe this is just temporary.


I'm hoping this is temporary but, this time, it isn't going away. This definitely comes under the heading of creative management. I'm doing the bath thing, aromatherapy, relaxation exercises and biofeedback. It falls under anything and everything that I can do to tolerate agony. It's amazing how intimate the relationship is between pain and depression. Chronic pain is depressing and there's no way around it. It changes your whole life and your outlook on life. It needs to be strictly monitored otherwise you can find yourself immersing yourself in the isolation and depression. 


It can happen in an instant. 


I have to say that it's a lot easier to be alone in the pain. It gets tiring answering all the questions. Even though it is well meant just hearing "do you need anything" or "can I do anything" all the time just seems to get to me. I know that its crazy to think that way but I can't help it. Maybe it's just my personality that likes to keep in control and those questions bring it home that I'm not. All I know is that I'm not in a healthy state right now. 


Does anyone else retreat in the face of pain?  It's a formidable opponent. You can't see how severe it is. It's very difficult to keep a happy face when the levels get up there. Because it isn't visible it's difficult for people to gauge and sometimes it affects how people view our fight. People cannot understand what's happening on the inside because they'll never see it on the outside. It is truly a constant struggle. 


There's time I think I'm winning and then times I think it is.


Did I just say "winning?"


Oh my...........I'm so not Charlie Sheen.


I really do want a bed of roses.............


I'm so much more Bon Jovi.

PASSING THE TORCH

They tried to kill us.

We won.

Let's eat.

I have so many childhood memories tied up in this time of year. My mother used to make me sit by her while she made Passover dinner for more than 40 people. She did this two nights in a row. She would explain the right way to prepare the food and how to set the table. It was truly a hands on approach. Although it made me crazy back then, I'm now very glad that she made me sit there and pay attention. During those times I gained a love of cooking that has stayed with me. Preparing the food for this holiday brings back memories of love and security and also a great amount of respect for the amount of work that she tackled with perfection.

I really don't know how she did it.

Everything was planned weeks in advance. Food was delivered and when I say food, I mean tons of it. For example, I went through 60 eggs for just one evening. I can't even imagine what she went through. I don't know how much those dinners must have cost but I know it was a bundle. The tables were set with china and beautiful stemware. She took pride in the details. Everyone loved to come to our house and they loved her cooking. 

We did that every year along with every other holiday that was out there. We had the home where everyone would gather. When my parents passed away it just never seemed the same. The family kind of scattered and the dinners faded away. When I got married we started up again and all that love of preparation that I gained by osmosis came pouring out again.

And I wanted to give that all to my daughter.

We haven't had a Passover in over ten years and that one doesn't really count. The reason I say that is my niece wanted me to prepare the food for a Seder that her church was having. It was for over a hundred people. We peeled onions, garlic and apples. Enough to fill a wheelbarrow. By the time the week was over I was a real loony tune. It took me over ten years to want to repeat the experience. Now, our dinner was for only thirty and it shouldn't have been any big deal after cooking for one hundred but I didn't have Fibromyalgia then either.

Note to self: If you try to prepare a Passover dinner with Fibromyalgia prepare to be in for a doozy of a flare.

I spent two days cooking. Normally, that would be a piece of cake (and yes, I made those too) but by the time Friday morning hit the pain was out of control. I slugged down the pain medication and kept on. I loved watching my daughter through this process. She has the same love of preparation and cooking that her grandmother had and her execution is just fabulous.

Anyway, I managed to get through the dinner without crying but by the time I got home it was ugly. Real ugly. I've been in bed ever since. The pain went from out of control to excruciating and it has remained at that level. I can't seem to get it back under control. Every bone in my body is wracked with pain. Every time I move, I want to cry. I took a hot shower and the water hitting my back hurt. I tried to make some eggs but it hurt to move the spatula. I wanted a diet coke but it hurt to lift the glass. I don't want to see anyone or talk to anyone. I just want the pain to go away.

Whine, bitch, moan and complain.

Pain brings out the real pleasant part of your personality.

But my daughter has taken the reins with the same fervor that her grandmother possessed.

The torch has been passed.