Saturday, December 19, 2009


Pain is something I have come to deal with on a daily basis. I am so familiar with it that it is often more remarkable when I DON'T have pain than when I DO.

I used to think I was tough. I felt I could grin a bear it through pretty much anything. I didn't like to take medication unless I absolutely had to. There was a time when I only needed a half dose of OTC pain or cold medicine to do the same job as a whole dose would for anyone else. About six years ago, things started to get a little haywire though.

My struggles with pain specifically started just after EG was born. I was laid off just after I found out I was pregnant and wasn't able to find a job again until she was about 10 weeks old. One week after I started, I went to the ER for stabbing pain in my stomach and I was admitted immediately. I had my gall bladder removed the next day. The recovery was not as easy as I had hoped. The surgery was laproscopic, so I only had three small incisions but the fatigue and immobility were what really drug me down. I was trying to nurse (and pump three to four times a day at work,) recover from surgery, and work full time after almost a year of being at home. I just hurt so much more than I was supposed to, according to my doctor.

Once I was back at work after the surgery, I got the flu, then a stomach virus, then a cold and I just never seemed to improve. I would get sick and then not recover fully before getting sick again. When I wasn't sick, one of the girls was sick, and that meant no school or daycare until they were better. Back-up babysitters were hard to come by for us and none of them were old enough to stay by themselves at home. Darling Hubby did the best he could to take turns staying home with them when we had to, but I still called in to work 5 times in the first four months of that job. That was the first time I got fired, but it definitely wasn't the last.

I had already been seeing a doctor regularly for symptoms of that they called Depression. I call it the Big Gray Monster because that is what it feels like. Gray and hideous and chewing on you all the time. Recently doctors figured out that general pain and discomfort can be a very real part of depression and that there is a treatment for it. A few years ago, I had never heard of them being related so I felt like I was a real whiner whenever I thought about asking my doctor about it. It was still tolerable, though. Nothing to really stop my day, just enough to make me grouchy (or grouchier than I already was.)

About a year after my gall bladder was removed, I got an awful sinus infection. It caused the worst headache I had ever had in my life. I was used to a little sinus pressure every now and again when the weather would change or with a cold. This was nothing like that. The only way I can describe it is like having a thousand, angry, red ants attacking you on the inside of your skull. It was completely unrelenting and debilitating. I started having troubles with side effects from my anti-depressants on top of the headache and it was no surprise when I lost my job again.

I thought perhaps the headache was stress-related but even when things improved (financially and otherwise) the headache still continued without any real break. I started seeing a neurologist along with my regular doctor and even added in a psychiatrist as well, just for good measure. Between the three of them I tried out almost every anti-migraine, anti-seizure, and anti-depressant available. One would cause me to gain weight. Another caused my hair to fall out and gain weight. A different one caused me lose weight but I lost some short term and even long term memory. One of them caused me to cry at anything and everything. That is on top of all the other random side effects they come with. Not one of them got rid of the headache.

I had MRI's, CAT Scans, X-Rays; I was hooked up to a monitor for two or three days at a time.
Everything was "Inconclusive." I used ice, heat, pressure points, vitamins, food combining, and special diets. I saw a chiropractor for awhile and considered acupuncture (although I haven't gone that far yet.) Sometimes I would have a good month and I would only need migraine arrest medication or narcotic pain killers for 4 out of 7 days a week. Other times I might be in bed for 6 straight weeks without any relief at all, no matter what I tried. Let me tell you this does quite a number on home life. DH was feeling like a single parent and the girls were walking around singing, "Sometimes I feel like a motherless chi-ild....."

I remember lying down with a pillow over my face praying that the pain would stop, hating myself for not getting up, but unable to move without making the pain worse. I spent a lot of time alone, in bed. If I was up and around I tended to snap at the family and I would much rather have been completely absent than yell and scream at them for no reason at all. I lost days and weeks at a stretch from various pain meds and treatments. Just when I thought I was getting better, I would go back to work, they would increase intensity and frequency and I would lose that job, too.

The thing is, I was dealing with my Gray Monster on top of the pain. There were times I wasn't even in that much pain, but just thinking about being in public was too much to consider. It is so hard to separate one from the other when you are in that deep, dark place. I am ashamed to say, I probably hit the pain meds a little too hard, as well, at times. Being fuzzy and detached was preferable to whatever was going on in my mind.

My personality and habits have changed so much because of the constant pain that I hardly recognize myself anymore. I have always been a shower-every-day kind of person, but there are still times that I can't drag myself into the shower more than every other day, if I am doing good. Baggy t-shirts, jeans or sweats, and sneakers are my main uniform and I only wear makeup or jewelery if I have a specific appointment. I don't like looking in the mirror much at all. It isn't because I think I am ugly. I am mostly ashamed of what I have done to myself out of neglect and self-abuse. Weight gain and loss has always been a big problem for me and of course, sleeping for days at a time isn't very good for that. Well, it might have been if I wasn't waking up every few hours feeling miserable and deciding that I really "needed" something to help me feel better. I wasn't a junk food junkie before, but in the last three years, especially, I have put more junk in this "temple" than I care to even think about. I will readily admit that I have an addiction to cola - Dr. Pepper specifically. Ice cream is also a band-aid for bad moods that I have used far too often.

Right now I am looking at an extra 50 pounds or so between me and my "ideal" weight. On a 4'11" frame, 50 pounds is a very big deal. I have never been slender but I used to have pretty nice figure. I have boobs and a butt, and hips for birthin' babies. As much as DH loves it, that all adds to the pain as well. Sporting a pair of 40DD's is not conducive to good posture or a healthy spine. I have had arthritic knees since high school (related to a birth defect of my legs) so walking, running, climbing stairs, and pretty much anything that will break a sweat is generally painful to do. That makes exercising a very difficult thing to get motivated about. Unfortunately, you can't get rid of 50 pounds by diet alone, and so it stays for now.

God bless DH for putting up with me and dealing with me through all of this. I feel terrible for him at times for having to put up with me and all of this. When we met I was smaller, spunkier, happier, and much more confident in myself. It is so hard to connect the woman I am now with the woman I was back then. He has to pull double duty as a Dad AND a Mom so often, the girls forget when I'm home and awake that they can come to me for what they need. I do my best to let him know how much I love him and how much I appreciate him for his patience. His answer is, "I did say in sickness and in health." (Actually, he didn't because we wrote our own vows and that wasn't part of it, but I get what he is trying to say.)

Now, after 5 1/2 years of headaches, the rest of my body has started hurting too. It often feels like I have a pulled muscle or strained something in one of my joints. Most of my body is tender to the touch, especially my calves, hips, and back. Scratching an itch feels similar to getting punched or hit with a dull object and it can ache for hours afterwards. My current job is as an on-site transcriber for a few hours in the evenings. Three or four days in a row of working and it usually feels like I have been lifting 50 pound boxes all day and night. Imagine the symptoms of Carpal Tunnel Syndrome that go all the way up your arms and into your upper back and down your spine.

Three out of four doctors have said that my body pain is caused by Fibro Myalgia. That isn't even a disease - it's a description of a series of symptoms that have no real known cause. It literally means "Muscle Pain" or "Muscle Sickness." I am not saying that it isn't real, I know far too well that it is. I am just incredibly frustrated that there is no cure or even a disease to point at, just a diagnosis that is the conclusion after a process of elimination. The symptoms that come along with the condition are not the same for every one. There are 18 points of pain that are most common for FM sufferers and there is almost always fatigue involved as well. I am waiting for a referral to a Rheumatologist for a final diagnosis, but I am pretty confident of what they will say.

One of the more common medications to treat FM is one that I am already taking. An increase in the dosage hasn't really decreased the pain, but it has helped with the fatigue so I'll take what I can get for now. I have managed to quit drinking Dr. Pepper (for the 5th or so time) and that seems to help the headaches a bit, too. Also, once I got over the initial fear that I was becoming addicted to painkillers, I realized that as long as I am mindful about when and how I take it, I am doing alright. I have learned that taking a small dose as soon as I feel pain is better than waiting and putting off taking something and then needing a larger dose. As long as I don't take more than I need, take it more often than I need to, or take it when I don't have any pain, I am in control.

The deep dark secret I have though, is that I am almost afraid of what will happen if I do manager to overcome all this pain. I have been hurting in one place or another for so long that I have begun to identify myself by it. What would I do if I could wake up everyday with no pain and a clear head? What would life be like without either being in pain, feeling the relief of pain killers, or waiting until the next headache hits? Of course, I WANT to be free of the pain, but I have lived with it so long now, I don't know what I would do without it.

1 comment:

  1. No matter what, Debs... you are loved and there is support for you in this journey! Thank you for being upfront and honest and letting us know...