September 12, 2004
Family, Kids & EX this time
Lets face it, men and women in American society are raised with different expectations. While women are taught that it is OK, completely natural to talk about their ailments, men are told from early childhood that we are to be stoic, to never complain about pain or fatigue, unless it is the "burn" from exercise, or some other macho thing.
We are expected to just suck it up and keep going, despite pain and fatigue. Just look at any action movie. My father went 18 years working at a rubber mill, doing intensely physical labor. During this time, he missed a total of four days from work. One when he was in a bar fight and spent the night in jail, and couldn't get out in time to show up, one when he had an on the job accident that tore his right hand up, requiring over 40 stitches, and two when he had surgery to remove scar tissue from his hand, caused mostly from going back to work before any of the tissue had had a chance to begin knitting back together.
Was he considered foolish for returning to work so quickly, and forced by management to take more time off? No, he was a man's man, and admired for his perseverance. My mother during this same time missed a week with the flu - Dad had it just as bad, but worked through it - several days when she twisted an ankle, and many individual sick days that usually used up her allotment of sick time each month. Was she chastised for missing so much? No, she was a woman, and expected to be more fragile and to need more time to recover from even the slightest thing.
Things are slowly changing, but for our generation, the old attitudes still apply. Even if only in our own minds. Often, though, the place that this gender specific expectation system most effects us is in the doctors office. If a man comes in with complaints of generalized pain and fatigue, we are blown off as whiners. It is for this very reason that FM is still considered a "womens ailment", and there are still over ten times as many women diagnosed each year. Not because there aren't almost as many men with FM, but because the expectations of male behavior sets us up to be dismissed when we complain.
This is true after diagnosis, when we have to start giving up activities, and talking to friends and family about our condition and limitations. People just plain do not understand why we can't just tough it out and keep going, and look down on us as wimps and lazy because we just can't do that. The hardest people to make understand the need for staying within our limitations are our male relatives and friends. They have seen us healthy, and since we do not look like we are dying of some terrible wasting illness they assume that we can do all we could before.
This is very painful (another thing men are not supposed to admit). We are supposed to just say "To hell with them", and never look back when people in our lives make disparaging remarks or talk about us behind our backs. Simple fact though, we have the same emotions as women, we have just been taught to hide them.
My time today is limited, so more on this tomorrow, when I will talk about how I have learned to deal with these issues, become actually stronger emotionally, and reduced the stress on my life by actively and aggressively challenging these expectations and refusing to be let others define who I am based on their reactions to my limitations.
September 1, 2004
How I feel today
Today I had to get up early, with no caffeine (a cruel torturous joke if ever there was one). A week ago, I somehow got my dilantin levels way too high, and began having seizures with no auras, the sensory warning signs of an oncoming seizure. I also lost all equilibrium, to the point where not only could I not keep my balance walking, even with a cane, but could not even crawl on my hands and knees without falling over.
I was taken to the ER and admitted. The bloodwork showed that my dilantin levels were not only a little high, but actually toxic. I spent from Monday evening to Saturday afternoon in the hospital, while they waited for my levels to go down. This went very slowly, as for some reason, likely having to do with irritable bowel syndrome, the medication was not breaking down and being eliminated.
To make a long story short, today I had an early morning appointment for an EEG to see if they could find out if I was still having abnormal brain waves, and if the hypothalamus was still hyperstimulated. Ever since I started having the unpredictable seizures, I had not taken my pain medication or my antidepressant because they can lower seizure threshold. So my pain levels have been over the roof, and my mood has not been the best. The doctor did prescribe vicodin for pain, but the thing is, vicodin is only 5 mgs hydrocodone, and 500 mgs acetaminophen. That much acetaminophen is very hard on the liver, kidneys, and digestive tract, and I have found that not only does the acetaminophen do nothing for neurogenic pain (the kind that is mostly generated within the neural pathways, as opposed to idiopathic pain, generated in the tissues in response to trauma), but after only two or three of the four doses a day it upsets my stomach and just makes things worse.
So here I am, just getting caught up on caffeine, pain levels at a 7 on a scale of 1 to 10, and trying to be active enough to recover from all those days on my back. My balance has not returned to normal, and I am still having to stop, close my eyes, and wait out the dizzy graying out.
I have to read through the posts in my support group, as now that I am home and doing better I feel that I have to take up the reins again, if only partially for now. The membership there has come to depend on me to a great extent for research, answering questions, and advice in dealing with doctors who just do not want to or don't have the time to truly educate themselves on FM.
The link to the support group is: http://health.groups.yahoo.com/group/Fibromyalgia-CFS/ .
Tomorrow I will talk a little about how as a man, taught from infancy to be a "man's man", and work through anything, never admitting pain, fatigue, or any physical limitations has had to learn to admit to pain, fatigue, and accept those limitations, and how I have had to learn to say "No, I just can't", when asked to do more than I am able that day. This is one of the primary differences in how men and women both react to the illness and are perceived by others when the FM begins to affect their activity levels.
Hi all, I'm Michael, a 43 year old man who has had fibromyalgia symptom's for at least 16 years, and was diagnosed about four and a half years ago.
The reason it took so long was that most doctors, when I first started trying to find out what the heck was wrong with me, had never even heard of FM, and if they had, didn't believe it was a real illness. To make matters worse, those who did know that it was real thought that it was a "women's illness", and that men just couldn't get it.
In the late 90's, I was married, had two great kids, owned a moderately successful residential contracting business, and thought life was pretty good, despite the constant pain and fatigue I felt. I had pretty much decided that this was simply the cost of the long hours I put in, and that I was just being kind of a wimp - that I needed to just "suck it up and handle it like a man".
Then life began to be not so good. I began making mistakes on bids, and on material lists, mistakes that were costing real money. My memory started to be a little unreliable, in a funny sort of way. I would know that I had to do something, forget to do it, and forget that I had forgotten. I would leave a subside to get a simple thing like more nails, and find myself driving around trying to remember where I was going, and what I was supposed to do when I got there. I started to lose jobsites, I know, sounds funny, but it really isn't when you have a full crew waiting on the clock, or a homeowner waiting to give you a deposit check before going to work.
I finally had to admit that even though the doctors all said they could not find anything wrong with me, I was no longer able to function through the pain and fatigue well enough to remain at all profitable. I gave up my business, and went to work for other contractors. At least this way, the hours were much shorter, and I could function well enough to at least keep a job.
This lasted a couple of years, but as things continued to get worse, my production went down. At first, it was a gradual enough thing that my bosses didn't mind too much. It was all piecework, and all it meant to them was that the jobs took me a little longer, and the weekly paychecks they wrote were slightly smaller.
My wife became convinced that I was having affairs, and that the money I was no longer bringing home for the same number of hours was being spent on other things before it made it to the house. It didn't take long for her suspicion and doubt, coupled with her contempt for my "wimpyness", to lead her to give up on the marriage.
This brought on my first real flare, a dramatic increase in symptom's, as well as a deep depression. I became virtually housebound, and went on welfare. I had lost all those things which had always, in my mind, defined who I was as a man. I could not work, had lost my family, and had lost all those activities that were to me so much a part of my life - whitewater rafting, backpacking in the deep woods, wild caving, competitive martial arts, etc.
It was a few months later, while seeing a mental health therapist, that I was given the first clue what may be wrong. My therapists' wife had FM, and he knew about the symptom's and how to check for the Tender Points (eighteen specific spots that are extremely sensitive to touch on FM patients). He checked them, and referred me to his wife's Dr. who diagnosed me with fibromyalgia.
As the immediate stress of the divorce ebbed, and the flareup subsided to the level of symptom's I was at before my wife left, I decided that it was time to return to work. I knew I could no longer handle the hard physical labor involved in contracting work, so I became a traffic control flagger. This lasted about 10 months, as I went from being the most reliable employee, always first called for jobs, to the least reliable, having to turn down dispatches on bad days, and often having to call in for a replacement when I found that I could not make it through the day.
Once again, I went on welfare. This time though, it was with a disabling diagnosis, and a wonderful doctor. It was during this time that I met Rose, my now common law wife. We are prevented from marrying by the rules of her disability income, because she would lose half of her grant should she marry.
I have now come to terms with my illness, having learned to take charge of my own medical care, to educate my doctors, and to stand up and hold my ground when put down because I don't work, even though I "don't look like there's anything wrong with me".
I have developed other health issues along the way, some from medications, some that are commonly co-occurring conditions with FM, ranging from irritable bowel syndrome to recurrent seizure disorder. I have learned to remain involved in those activities I once enjoyed, if only vicariously from the sidelines, and how to both self advocate for my disabilities and to help others to do the same.
I am the primary owner and manager of the largest medically based online support group in the world, although I have learned to step back when necessary and allow the management team to take over when I am not able to keep up.
Now that you all know me a little, I will just say that I will try to post a little bit each day, although there will be times when I have to be very careful with my priorities. In my next entry, I will talk a little bit about the special challenges that men with FM face, as opposed to most female FM patients, and talk a little bit more about my family.
Thanks to each of you who take the time to read this, I hope that by talking each day about my life, and the way that FM effects it in so many ways, that others might find the same kind of non-defeatist acceptance of their challenges as well.