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.

JAGGED LITTLE PILL

Pills.

Supplements.

This is what I feel I'm made of.

Just one more.

Maybe the next one will do the trick.

I feel like all I do is take pills. When I wake up in the morning I take pills and when I go to sleep at night I take pills. It doesn't matter that they are all prescribed or supplements. It's just more pills than I can handle.

Where do I start? Well, let's start with the thyroid medication in the morning. Before the car accident I went to the neurologist because my hands were cold and tingling. The neurologist wanted me to get an MRI to rule out neurological problems that could cause those symptoms. It turns out that it was my thyroid. And I was hypothyroid with a vengeance. I thought that once I started the medication I'd lose weight. It didn't matter to me in the slightest that the tingling and coldness in my hands went away. All I cared was the weight that I couldn't seem to lose would come off once I started the medication. Maybe I'm naive but if the weight stays because your thyroid is off balance it stands to reason, at least in my mind, that once it's regulated the weight would come off. I still don't get it.

After that, the supplements are taken en-mass. The alphabet vitamins. The A,B,C,D and E.,  DHEA, CoQ10, multi-vitamins are gulped down with a protein drink. Every morning I look at those and just wonder if I can swallow them again. Pain medication is taken so the stiffness and pain that comes in the morning can be tolerated. You know what's funny? I have been asked why the strength of the pain medication that I've been taking for years is the same. That is a really easy question for me to answer. I've always been afraid of the amount of medication that I'd have to take to get rid of the pain.  I don't want to be zonked out and a zombie. It's just not a good place to be so I've resisted upping the strength of the pain medication. It's a double edged sword.  It's almost implying that if I'm on the same strength the pain must be the same and that's not it at all. It's fear plain and simple. Well, let's keep going on.............

Then comes the morning coffee. Or some semblance thereof. My coffee is mostly vanilla powder and sweet and low mixed with a little bit of coffee. My daughter shudders when she watches me make my "coffee." 

Do the supplements work? I don't notice any difference but, funnily enough, I am a little afraid to stop taking them. After all of the pill taking I massage Topricin in my hands and feet. Believe it or not, this is what it takes to get moving in the morning. 


If you haven't tried Topricin you should. It's a homeopathic cream for pain. I got it a Whole Foods but you can also buy it online. I've included the link so just click on the name and you can read all about it. Topricin recently received a patent for the treatment of Fibromyalgia pain. It's an amazing product and it really seems to help.


By the time the evening arrives it's time for the last round of medication. The evening includes magnesium, pain medication and muscle relaxers. I try to get through the day without loading up on the muscle relaxers but that depends on the severity of the muscle spasms. Then I start the ritual for sleep. This involves lavender aromatherapy and pillow spray. Lavender vanilla cream is massaged into my arms and then I take Mid Nites. They are melatonin melt away pills that help me relax and drift off into sleep. 


Well, do they really?  


I still have a problem sleeping. I can sleep for a few hours and then I'm up. Where I could fall asleep at the drop of a hat before.......well, there are a lot of things that I used to do BEFORE.....


Before what you ask?


Before Fibromyalgia.
Before the car accident.
Just before. B-4??


Bingo.

EYES WIDE OPEN

I have been so very tired.

It's almost impossible to keep my eyes open.

Except now.

I'll probably be up all night.

I had never heard of the condition called alpha wave intrusion. I knew a little about brain waves, mostly in connection with biofeedback and meditation. I'd never heard about the intrusion part.

One of the problems with Fibromyalgia is that we are often plagued with poor sleep and insomnia. There are different brain waves associated with the different levels of sleep. Alpha waves are associated with an active, awake mind. Deep sleep is associated with delta waves. If and when we do manage to get to the delta level of sleep, people with Fibromyalgia usually have those pesky little alpha waves show up right in the middle of that deep, restorative delta sleep.

It's during those deep levels of sleep that the body, and more specifically, the muscles can repair themselves. I'm guessing that the stiffness of our muscles in the morning really can't be traced back to the sleep problems. Or can it? I don't know because even if I do take a sleep aid I still wake up with severe muscle stiffness. 

Anyway, I've spent the last few days sleeping. Maybe I'm just catching up on sleep but it seems that every time my head hits the pillow I want to sleep. Now, it's not for a great length of time, just a cat nap. 


So now, the dilemma. Do I give in to the extreme exhaustion and sleep or force myself to stay awake and then try not to get so tired that I can't sleep? Every article I read about sleep tells me not to sleep during the day so that I can sleep at night. That would be a great tip except it doesn't work that way for me.


I still don't sleep well no matter what.


Behavioral modification doesn't do much for my sleep. Believe me, I've tried it for more than one day. I wanted to give it a real shot at working. 


It didn't.


First of all, I shouldn't be in bed with my laptop or have the TV on. I tried this. I really did but when the pain is spiking laying in bed in the dark with nothing to distract me is a real recipe for disaster. Distraction by any means possible is a way to get through the pain. It really does help to have something else on which to focus. 


Even if I do wake up and go to sleep at the same time every day it seems to have nothing to do with the amount of sleep I get through the night. Even if I somehow manage to sleep through the night, I still don't have restful, recuperative sleep. Most of the time, no matter what kind of schedule I keep, I am awake most of the night. 


So what do I do?


I do the bath thing.


I do the aromatherapy thing.


I do the sleep mask thing.


I do the melatonin thing.


I just don't do the sleep thing.

THE NEST

The nest.

It protects and it nurtures.

It shields and it comforts.

I went to the support group luncheon today. There were only a few women there and, at first, I was a little disappointed that more people didn't show up. 

It turned out to be a blessing.

We opened up to each other and told our stories. We offered simple remedies that worked for us for sleep or pain. We could agree to disagree about medications. 

What a wonderful afternoon. We really got to spend some quality time together and got to know each other. Then we started talking about our beds and a lovely woman named Marianne gave it the definitive name.

The nest.

So today I'll write about my nest. I'm big on white sheets. I think it's yummy to get into cool, crisp white sheets. Also, because I don't sleep real well, I use aromatherapy. Lavender is great for sleep and I spray that on the pillow cases. 

I could really relate to the term "the nest" because I'm also big on pillows.

And I've got a really big pillow. 

Meet the Comfort-U pillow. It was designed by a nurse who also has Fibromyalgia. I stumbled on this a few years back and I truly cannot live without this pillow. It's a big horseshoe of a pillow that can be twisted and turned any way possible so that there is no pressure on your body. I LOVE this thing. It is kind of expensive but it has been well worth it!

The last part of this little ritual is my natural sleep aid. It's called Mid Nites and I get them at Walgreen's. They are completely natural and they do help me relax and sleep. I hesitate to take prescription sleep aids because I take medications for pain and muscle spasms. I don't like combining too many medications because I don't know how they will react and interact with each other.

So here I am surrounded by pillows and the sweet smell of lavender. I wish I could say that I'm off to dreamland but, alas, this is not the case. So on the top of those sweet smelling sheets and pillows is my laptop. I also have my television that stays on pretty much all night. I know that doctors would tell me that would not be conducive to a good nights sleep but their ideas don't work for me.

I've tried them.

Now, I like the bath idea to get relaxed. As far as I'm concerned, everything goes better with water! What doctors prescribe as behavioral modifications that will help treat insomnia just doesn't seem particularly helpful. I really do understand the intent but, for me, it doesn't really help me sleep. Actually, it makes it much worse. If I'm in pain and I'm lying in bed with no TV, phone or computer I would be a basket case and sleep would be pipe dream. What that means is that I'd have absolutely nothing to distract me. What I would be doing is lying in bed thinking about the pain.

I think that we all have different ideas and remedies that help us make it through the night. It's nice to hear what works for others because in the end all we have is each other. The medical community can prescribe pills but sometimes we need something else. 

We need comfort that isn't pharmacological.

We need support and we need each other.