I recently developed a back problem - possibly a disc bulge or herniation - that caused sciatica, which made my left leg numb and painful and weak. The weakness caused my ankle to roll, and it wasn't long before the ankle rolled at an inopportune moment as I reached the bottom the stairs and put my whole weight on that foot. Now I have a 3rd degree ankle sprain, and constant severe pain in my calf and ankle.
So what does that have to with understanding Fibromyalgia? Well, my wife has fibromyalgia. She's in constant pain and even the smallest things can aggravate it and doing tasks that most people wouldn't think twice about cause her great pain and exhaustion. Intellectually I understand that. But an intellectual understanding is not the same as sympathy and empathy and experiencing it a bit for yourself. Now that I'm dealing with this injury, walking to the other end of the house causes pan with every step which is oddly exhausting. Just bearing the pain - even with the meds - leaves me trembling an exhausted. I look at chores I should be doing, simple small chores, and just can't make myself do them because I know the price I'll pay in pain is just too high. Once I'm fairly comfortable in bed or sitting I'm now asking my daughters to fetch things for me, because to get up and get something myself requires great effort and pain. I feel useless, like a burden. It's extremely frustrating and it takes an emotional toll. And I've only been dealing with it for a week and only one leg bothering me! My wife has been dealing with it for a decade with her whole body bothering her. I now have a much better understanding of what she's going through and I admire the strength she has for continuing on despite everything. I wish I could make her better. No one deserves the kind of torture she endures on a daily basis.
Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts
Friday, November 13, 2009
Tuesday, September 8, 2009
Made it! Road trip update
First off to those who have been reading - thanks for all the comments. The comments think was a widget that some blog directory required me to use - Blog catalog I think - I'll try to figure out why it will only accept guest. Maybe you have to be logged in to blogger first?
Made it!
We made it. We drove with only short breaks about 1800 kilometres from BC to Manitoba via Montana and North Dakota. It took about 26 hours. I id all the driving and yes, I was very tired, but forced myself to stay awake a few more to visit and get a normal night's sleep so as not to totally mess up my sleep schedule.
So as expected, we did have adventures on the road trip. They just weren’t the ones we anticipated. The car made it fine – still sputtering but no major problems. But the guy at the place I just got my oil changed at thinks I may have to get the timing belt fixed - there goes another $600 down the tube!
The borders both going in and coming out were quick and painless – didn’t even wait in line. Though I got anxious every time I swiped my credit card – fully expecting a decline – it came back approved every time.
Somehow I had completely forgotten about motion sickness – both my daughters spent much of the time looking green and emptied their stomachs a few times. Luckily we always keep some empty yogurt containers in the car just for that eventuality!
The dogs were great except for one error in communication. You see, there was lightning the entire night. At first, River was OK with it, which was a bit of a surprise because he usually freaks out at thunderstorms. So when, after a break in the storm, the lightning came back and he started whining, we assumed it was the storm causing him to be upset. So we just did our best to calm him down, though we puzzled as to why the first storm hadn’t upset him, but this one did. Our discussion was interrupted by a foul smell and our daughters gagging and screaming about the horrible” smell. But River wasn’t whining anymore. I really must apologize to the people who adopted that portion of highway in Eastern Montana. I usually would not even consider littering, but there was no way I was going to travel the next 100 miles with a bag full of dog poop and the baby wipes I used to clean it up riding shotgun.
On another item, I am considering suing whoever at the Montana Department of Transportation is responsible for marking the bumps on the section of road construction happening on the Eastern section of highway 2. The first bump they labelled with massive sign turned out to be insignificant. So too with the second so called "bump". The third actual real bump, which would be more aptly described as the road equivalent of rapids rather than a bump, was labelled as “detour”. We arrived at the detour doing the recommended 35 MPH only to find ourselves flung up and down as if we’d just hit a section of speed-bumps at high speed. I’ve never done rodeo, but I imagine that this is what attempting to ride a bull feels like. My poor wife’s fibromyalgic muscles immediately responded by spasming severely and proceeding to cause her hours of excruciating pain on top of her already considerable pain. So if by some stroke of coincidence the man or woman responsible for labelling those bumps is reading this – I’d like you to do penance by driving that section at 50 MPH at least 10 times. Then your mistake will be forgiven and you can go and screw-up no more.
On the very much positive side, gas was at least 1/3 cheaper in the States versus Canada. Same with food. And that’s even taking exchange into consideration. The change of scenery was nice, though I wish we’d had time and money to stop at some of the attractions – like the “Bear drive-thru” where “your car is the cage.” And the amusement park with the maze and go-carts. And Glacier National Park river rafting.
There are some more details of the trip I will post later - since I'm borrowing a connection right now. My folks are in dial-up land, at Manipogo. So I'm taking advantage of my sister's high-speed while we're here in Dauphin (about an hour's drive from my parent's place). We came today instead of he planned trip on Wednesday because I had to take Niqi to the hospital for a severe fibromyalgia flare. She couldn't walk on her own, her pain was 14 out of 10 and her muscles were spasming and twitching. Not fun. Anyway, we decided to go to the closest hospital in Ste-Rose. The hospital has no Dr's apparently, they're all in the clinic. So after being seen at the hospital we had to go the clinic to see the doc, then back to the hospital. Sounds bad, but it wasn't - took maybe an hour. In contrast I once went to an ER in Downtown Vancouver with severe abdominal pain and was left curled up in a fetal position on the floor and vomiting for 4 hours before being seen. Then they kicked me out while I was still hopped up on morphine and in no condition to walk, because they needed the bed. Thank goodness for small town hospitals!!!
Will post again in a couple of days with pictures and video. Cheers everyone.
Made it!
We made it. We drove with only short breaks about 1800 kilometres from BC to Manitoba via Montana and North Dakota. It took about 26 hours. I id all the driving and yes, I was very tired, but forced myself to stay awake a few more to visit and get a normal night's sleep so as not to totally mess up my sleep schedule.
So as expected, we did have adventures on the road trip. They just weren’t the ones we anticipated. The car made it fine – still sputtering but no major problems. But the guy at the place I just got my oil changed at thinks I may have to get the timing belt fixed - there goes another $600 down the tube!
The borders both going in and coming out were quick and painless – didn’t even wait in line. Though I got anxious every time I swiped my credit card – fully expecting a decline – it came back approved every time.
Somehow I had completely forgotten about motion sickness – both my daughters spent much of the time looking green and emptied their stomachs a few times. Luckily we always keep some empty yogurt containers in the car just for that eventuality!
The dogs were great except for one error in communication. You see, there was lightning the entire night. At first, River was OK with it, which was a bit of a surprise because he usually freaks out at thunderstorms. So when, after a break in the storm, the lightning came back and he started whining, we assumed it was the storm causing him to be upset. So we just did our best to calm him down, though we puzzled as to why the first storm hadn’t upset him, but this one did. Our discussion was interrupted by a foul smell and our daughters gagging and screaming about the horrible” smell. But River wasn’t whining anymore. I really must apologize to the people who adopted that portion of highway in Eastern Montana. I usually would not even consider littering, but there was no way I was going to travel the next 100 miles with a bag full of dog poop and the baby wipes I used to clean it up riding shotgun.
On another item, I am considering suing whoever at the Montana Department of Transportation is responsible for marking the bumps on the section of road construction happening on the Eastern section of highway 2. The first bump they labelled with massive sign turned out to be insignificant. So too with the second so called "bump". The third actual real bump, which would be more aptly described as the road equivalent of rapids rather than a bump, was labelled as “detour”. We arrived at the detour doing the recommended 35 MPH only to find ourselves flung up and down as if we’d just hit a section of speed-bumps at high speed. I’ve never done rodeo, but I imagine that this is what attempting to ride a bull feels like. My poor wife’s fibromyalgic muscles immediately responded by spasming severely and proceeding to cause her hours of excruciating pain on top of her already considerable pain. So if by some stroke of coincidence the man or woman responsible for labelling those bumps is reading this – I’d like you to do penance by driving that section at 50 MPH at least 10 times. Then your mistake will be forgiven and you can go and screw-up no more.
On the very much positive side, gas was at least 1/3 cheaper in the States versus Canada. Same with food. And that’s even taking exchange into consideration. The change of scenery was nice, though I wish we’d had time and money to stop at some of the attractions – like the “Bear drive-thru” where “your car is the cage.” And the amusement park with the maze and go-carts. And Glacier National Park river rafting.
There are some more details of the trip I will post later - since I'm borrowing a connection right now. My folks are in dial-up land, at Manipogo. So I'm taking advantage of my sister's high-speed while we're here in Dauphin (about an hour's drive from my parent's place). We came today instead of he planned trip on Wednesday because I had to take Niqi to the hospital for a severe fibromyalgia flare. She couldn't walk on her own, her pain was 14 out of 10 and her muscles were spasming and twitching. Not fun. Anyway, we decided to go to the closest hospital in Ste-Rose. The hospital has no Dr's apparently, they're all in the clinic. So after being seen at the hospital we had to go the clinic to see the doc, then back to the hospital. Sounds bad, but it wasn't - took maybe an hour. In contrast I once went to an ER in Downtown Vancouver with severe abdominal pain and was left curled up in a fetal position on the floor and vomiting for 4 hours before being seen. Then they kicked me out while I was still hopped up on morphine and in no condition to walk, because they needed the bed. Thank goodness for small town hospitals!!!
Will post again in a couple of days with pictures and video. Cheers everyone.
Thursday, August 13, 2009
Fibromyalgia sucks for the whole family!
My wife has Fibromyalgia. It's this wonderful condition that most Dr.'s will tell you is all in your head but causes excruciating pain all over your body and renders you basically disabled. It really sucks for her, but it also sucks for the whole family! (No this is not a positive article - it's long winded venting. Feel free to stop reading anytime if that turns you off).
Here are just some of the things that suck about it:
1. Nobody cares. There's no pink ribbon campaigns, no marches in the streets, benefit concerts or relays. I mean, c'mon! Yeah Breast cancer can kill you, and it's hard to go through. But you either get better or you die. (Not to belittle breast cancer - it took my grandmother, after all.) Fibromyalgia on the other hand is like being sentenced to torture for years on end, but because you don't go bald, nobody sees it and nobody cares.
2. Nobody can do anything about it. Yeah there's some medicine that helps a little, but not much. Dr's have been ignoring FMS and not taking it seriously for so long that there are no really effective treatments out there.
3. My wife can't do a lot of things. If she does "suck it up" and do something that most people would find to be mildly strenuous, she pays for it with a week of extra pain. This means that she can't do chores so I have to do them all or they don't get done. The kids aren't much help. So we end up living in very messy conditions most of the time.
4. It makes me feel like a jerk. Yeah, I try to be supportive and stuff as much as I can. But I'm not a nursing type - I could have been a Dr. but I hate taking care of sick people. So when my wife is moaning in pain for the umpteenth time and the only feeling I can muster is something bordering on contempt - like when a mother just wants her baby to stop crying already - I feel like a jerk. It takes an emotional toll.
5. When I don't feel like a jerk, I feel helpless. It's hard to watch someone you love being in near constant pain and not be able to do anything about it. Hard. Such a limited word. How about - frustrating, exasperating, emotionally numbing and draining. It's like being behind glass watching as someone tortures your loved one and you pound and scream at the window. Only there's no evil person there on which to focus your anger, and it doesn't end. You can only bang and scream for so long before you become numb and resigned to it and stop caring. Then you feel like a jerk for not caring anymore. Back to number 4.
5. There's little to no support. In fact, there's a great deal of..whatever the opposite of support is. Contempt? Condescension?
Alcoholics have Al-anon to help their families. People dealing with cancer and other stuff in the family have support groups and hospital programs and charity foundations. Families with fibromyalgia instead get looked down upon - close family members don't really believe there's anything wrong with my wife - she doesn't "look sick" after all (what is pain supposed to look like anyway???). They think she's lazy and a bad wife etc. and why did I marry her.(or they did, some are starting to come around).
6. It's hard on the kids, too. I'm often surprised at how well the kids cope with this. They know to let my wife sleep and take care of themselves when she conks out in the middle of the afternoon. They don't complain that she can't take them hiking or bike riding, or any number of other activities that she wishes she could do with them. But there are lots of times when the answer is "Mommy is too sore," or "Mommy is too tired," that you can see their disappointment.
7. People just don't understand. They really don't. They may think they do, but they don't. Even people who have known someone with Fibromyalgia. It may have the same name, but it's a different disease for everyone. What may help enormously for one person, may actually hurt another. What's a major area of problems for one person is not a concern for another. For example, many FMS sufferers have bowel problems, but my wife doesn't.
8. Well intentioned advice is frequent and frustrating. Maybe if she would just exercise a little more. Maybe she should try this diet. Maybe she go see a chiropractor. maybe she should drink more water. And on, and on. To those who offer this advice - thank you for your caring and your good intentions and desire to help. But we have honestly tried just about everything there is to try and we've heard it all before.
9. Loss of income. My wife can't work. That's not to say she can't do anything. She's a smart woman. But it's unpredictable as to when she'll have a good day, when she'll have a bad day. There's also the issue of "fibro-fog" that slows the thinking and makes her confused and fumble with words. We've struggled to come up with ways for her do something at home on her own terms that can make some money, but so far no luck. On top of that because we're a single income family we're taxed more that a family with two people bringing in the same income would be. So any extra money I'm able to bring in is taxed at the maximum possible. How is that fair?
10. I'm exhausted. You know those single moms who have to do everything - cook, clean, take care of the kids and work? Or the sports widows who's husbands don't help at all (hate to stereotype my fellow husbands but there are some guys that really are like that). Well, it's a similar situation. I work full-time, plus overtime, I cook, I clean, I fix things, I do renovations etc etc. And then I feel guilty when I try to take some time for myself (but I've had to insist on that for my own sanity!).
That's enough whining and complaining for now. Though everything I've just said is true, we do adapt and most days are OK, or at least OK for much of the day. We're not in a constant state of suffering (well, my wife kind of is, but she has some days that OK too.) Despite everything, life is still worth living. Love is still worth giving and receiving. And we'll still be there for each other even when it sucks for the whole family.
Here are just some of the things that suck about it:
1. Nobody cares. There's no pink ribbon campaigns, no marches in the streets, benefit concerts or relays. I mean, c'mon! Yeah Breast cancer can kill you, and it's hard to go through. But you either get better or you die. (Not to belittle breast cancer - it took my grandmother, after all.) Fibromyalgia on the other hand is like being sentenced to torture for years on end, but because you don't go bald, nobody sees it and nobody cares.
2. Nobody can do anything about it. Yeah there's some medicine that helps a little, but not much. Dr's have been ignoring FMS and not taking it seriously for so long that there are no really effective treatments out there.
3. My wife can't do a lot of things. If she does "suck it up" and do something that most people would find to be mildly strenuous, she pays for it with a week of extra pain. This means that she can't do chores so I have to do them all or they don't get done. The kids aren't much help. So we end up living in very messy conditions most of the time.
4. It makes me feel like a jerk. Yeah, I try to be supportive and stuff as much as I can. But I'm not a nursing type - I could have been a Dr. but I hate taking care of sick people. So when my wife is moaning in pain for the umpteenth time and the only feeling I can muster is something bordering on contempt - like when a mother just wants her baby to stop crying already - I feel like a jerk. It takes an emotional toll.
5. When I don't feel like a jerk, I feel helpless. It's hard to watch someone you love being in near constant pain and not be able to do anything about it. Hard. Such a limited word. How about - frustrating, exasperating, emotionally numbing and draining. It's like being behind glass watching as someone tortures your loved one and you pound and scream at the window. Only there's no evil person there on which to focus your anger, and it doesn't end. You can only bang and scream for so long before you become numb and resigned to it and stop caring. Then you feel like a jerk for not caring anymore. Back to number 4.
5. There's little to no support. In fact, there's a great deal of..whatever the opposite of support is. Contempt? Condescension?
Alcoholics have Al-anon to help their families. People dealing with cancer and other stuff in the family have support groups and hospital programs and charity foundations. Families with fibromyalgia instead get looked down upon - close family members don't really believe there's anything wrong with my wife - she doesn't "look sick" after all (what is pain supposed to look like anyway???). They think she's lazy and a bad wife etc. and why did I marry her.(or they did, some are starting to come around).
6. It's hard on the kids, too. I'm often surprised at how well the kids cope with this. They know to let my wife sleep and take care of themselves when she conks out in the middle of the afternoon. They don't complain that she can't take them hiking or bike riding, or any number of other activities that she wishes she could do with them. But there are lots of times when the answer is "Mommy is too sore," or "Mommy is too tired," that you can see their disappointment.
7. People just don't understand. They really don't. They may think they do, but they don't. Even people who have known someone with Fibromyalgia. It may have the same name, but it's a different disease for everyone. What may help enormously for one person, may actually hurt another. What's a major area of problems for one person is not a concern for another. For example, many FMS sufferers have bowel problems, but my wife doesn't.
8. Well intentioned advice is frequent and frustrating. Maybe if she would just exercise a little more. Maybe she should try this diet. Maybe she go see a chiropractor. maybe she should drink more water. And on, and on. To those who offer this advice - thank you for your caring and your good intentions and desire to help. But we have honestly tried just about everything there is to try and we've heard it all before.
9. Loss of income. My wife can't work. That's not to say she can't do anything. She's a smart woman. But it's unpredictable as to when she'll have a good day, when she'll have a bad day. There's also the issue of "fibro-fog" that slows the thinking and makes her confused and fumble with words. We've struggled to come up with ways for her do something at home on her own terms that can make some money, but so far no luck. On top of that because we're a single income family we're taxed more that a family with two people bringing in the same income would be. So any extra money I'm able to bring in is taxed at the maximum possible. How is that fair?
10. I'm exhausted. You know those single moms who have to do everything - cook, clean, take care of the kids and work? Or the sports widows who's husbands don't help at all (hate to stereotype my fellow husbands but there are some guys that really are like that). Well, it's a similar situation. I work full-time, plus overtime, I cook, I clean, I fix things, I do renovations etc etc. And then I feel guilty when I try to take some time for myself (but I've had to insist on that for my own sanity!).
That's enough whining and complaining for now. Though everything I've just said is true, we do adapt and most days are OK, or at least OK for much of the day. We're not in a constant state of suffering (well, my wife kind of is, but she has some days that OK too.) Despite everything, life is still worth living. Love is still worth giving and receiving. And we'll still be there for each other even when it sucks for the whole family.
Sunday, July 26, 2009
So Little time
First, happy anniversary to my wife Niqi (pronounced Nikki - it's short for Monique). We've been together 11 years now.
It's a Sunday afternoon and writing this blog is a break from doing some overtime trying to catch up on my day job work. Over the last couple of years I've come to really resent my job. Mostly because it feels like a drain of time and energy, leaving me with nothing left to accomplish the things I actually want to do. There's a bit a vicious cycle to it. If I get a bit behind, I get discourage and become distracted, which puts me even more behind - compounding the problem. It wasn't always like this. I used to love my job and get a great deal of satisfaction from it. But in the past few years volume has increased substantially and we're still expected to get through it. It's like that Dilbert comic where the boss says - "Think of work as its own reward... Expect to be rewarded a lot more in the coming year."
I've got a long list of things to do: renovations, of course. But also my other projects I'm doing in an attempt to make money - on-line stores. I'm also setting up a Kung-Fu items shop in my Kung-Fu school. And of course, time with family, time to exercise, time for the pets, making meals, regular house-hold chores, etc. etc. etc.
I'm not a type A. Frankly I'm kind of lazy. I sleep in lots and hit the snooze button dozens of times. Thankfully I don't have a commute so I don't have the embarrassment of walking into the office late all the time. But if I sleep late, I have to work late. A good work ethic was something I developed in my 20s, but it's not a natural thing - I have to work at it. Then there's the energy issue. I may have a free evening, but if I've already worked a full day and overtime I'm often too exhausted to get up the energy to do anything significant.
I like living in a clean and neat place, but I'm messy and don't like to clean much (and it's low on the priority scale)
My kids (8 and 10 years old) are very talented mess makers, but are as stubborn as mules when it comes to doing chores. (I promise to wrie nice things about them in my blog at some point instead of just complainng - they really are great kids).
My wife has Fibromyalgia which puts her in constant pain (see side bar for a link to her blog). It's the worst type of disability I can think of other than brain injuries and brain diseases. First, there is constant pain that makes doing anything difficult and excruciatingly painful. If you have a somewhat good day and overdo it (and by overdo I mean do a fraction of what others would consider light work) - then you pay for it with a week of pain. Doctors don't know what causes it or how to effectively treat it, and there are no concrete tests for it. Which means many Dr.'s will tell you stupid things like it's all in your head etc. and basically treat you like a whiner. Reaction from family is generally no better - you see, with fibro, you don't look sick. So there's a big stigma to t. Many will consider you lazy and useless. Trust me - my wife would rather have both legs amputated than have to spend the rest of life with Fibro. It sucks more than you can imagine for her.
It's no picnic for me either. She can't clean much, she can't work, and she needs nursing.
I HATE nursing. I really dislike taking care of sick people - so having a wife who is constantly in pain is very frustrating for me. Her inability to contribute financially is frustrating in the extreme. And her limited ability to contribute much in the way of house work or renovations (at least without great painful sacrifices on her part) means that the great majority of work falls on my shoulders.
You know those women who complain that they have to work, take care of the kids, their husband etc and all he does is watch sports - it's kinda like that, but at least my spouse has a valid reason. Granted, Niqi does most of the child-care, but everything else is pretty much left to me. I have to prioritize, which means the house can go months without cleaning while I pursue other projects. The lawn is infrequently mowed. Projects can sit half-finished for weeks. My eldest daughters bedroom has sat vacant for the past month waiting for me to finish scraping the mold out of the ceiling which I could only tolerate doing for about 10 minutes at a time.
Some days I get a burst of energy and can plow through something at a quick pace without tiring for hours. But they are few and far between and I have no idea what triggers them. If I did, I'd be triggering them all the time.
Most of the time I can sit and stare at the to do list or project in front of me for long minutes trying to get the energy to dive in, like standing on the high diving board repeatedly counting to try trying to gather up get the courage to jump in.
One thing I really appreciate about my projects that is lacking from my work is the "once it's done, it's done" factor. Like cleaning, my work just keeps piling up. It's never done, there's always more and more and more. There's no sense of accomplishment where you can sit back and say it's done and admire your handiwork. There used to be. When volume was limited so that I could clean off my desk and take a deep breath, I felt great. On those days I went home smiling. But now there's often more on my desk at the end of the day than when I start. That's why I like working on the weekends - there's no email or new cases coming in. I can see the pile going down. During the week, the pile doesn't go down.
With renovation and other projects, there's a sense of accomplishment. A day later, a week later, a month later - I can look at what I've done and feel satisfied. It's there, it still looks great.
I look forward to the day when I can complete projects that generate money. Where something I build or got going months or years ago is still paying dividends. That must be a good feeling. I just have not ye been able to achieve that, yet. I will someday - if I can ever find the time!
It's a Sunday afternoon and writing this blog is a break from doing some overtime trying to catch up on my day job work. Over the last couple of years I've come to really resent my job. Mostly because it feels like a drain of time and energy, leaving me with nothing left to accomplish the things I actually want to do. There's a bit a vicious cycle to it. If I get a bit behind, I get discourage and become distracted, which puts me even more behind - compounding the problem. It wasn't always like this. I used to love my job and get a great deal of satisfaction from it. But in the past few years volume has increased substantially and we're still expected to get through it. It's like that Dilbert comic where the boss says - "Think of work as its own reward... Expect to be rewarded a lot more in the coming year."
I've got a long list of things to do: renovations, of course. But also my other projects I'm doing in an attempt to make money - on-line stores. I'm also setting up a Kung-Fu items shop in my Kung-Fu school. And of course, time with family, time to exercise, time for the pets, making meals, regular house-hold chores, etc. etc. etc.
I'm not a type A. Frankly I'm kind of lazy. I sleep in lots and hit the snooze button dozens of times. Thankfully I don't have a commute so I don't have the embarrassment of walking into the office late all the time. But if I sleep late, I have to work late. A good work ethic was something I developed in my 20s, but it's not a natural thing - I have to work at it. Then there's the energy issue. I may have a free evening, but if I've already worked a full day and overtime I'm often too exhausted to get up the energy to do anything significant.
I like living in a clean and neat place, but I'm messy and don't like to clean much (and it's low on the priority scale)
My kids (8 and 10 years old) are very talented mess makers, but are as stubborn as mules when it comes to doing chores. (I promise to wrie nice things about them in my blog at some point instead of just complainng - they really are great kids).
My wife has Fibromyalgia which puts her in constant pain (see side bar for a link to her blog). It's the worst type of disability I can think of other than brain injuries and brain diseases. First, there is constant pain that makes doing anything difficult and excruciatingly painful. If you have a somewhat good day and overdo it (and by overdo I mean do a fraction of what others would consider light work) - then you pay for it with a week of pain. Doctors don't know what causes it or how to effectively treat it, and there are no concrete tests for it. Which means many Dr.'s will tell you stupid things like it's all in your head etc. and basically treat you like a whiner. Reaction from family is generally no better - you see, with fibro, you don't look sick. So there's a big stigma to t. Many will consider you lazy and useless. Trust me - my wife would rather have both legs amputated than have to spend the rest of life with Fibro. It sucks more than you can imagine for her.
It's no picnic for me either. She can't clean much, she can't work, and she needs nursing.
I HATE nursing. I really dislike taking care of sick people - so having a wife who is constantly in pain is very frustrating for me. Her inability to contribute financially is frustrating in the extreme. And her limited ability to contribute much in the way of house work or renovations (at least without great painful sacrifices on her part) means that the great majority of work falls on my shoulders.
You know those women who complain that they have to work, take care of the kids, their husband etc and all he does is watch sports - it's kinda like that, but at least my spouse has a valid reason. Granted, Niqi does most of the child-care, but everything else is pretty much left to me. I have to prioritize, which means the house can go months without cleaning while I pursue other projects. The lawn is infrequently mowed. Projects can sit half-finished for weeks. My eldest daughters bedroom has sat vacant for the past month waiting for me to finish scraping the mold out of the ceiling which I could only tolerate doing for about 10 minutes at a time.
Some days I get a burst of energy and can plow through something at a quick pace without tiring for hours. But they are few and far between and I have no idea what triggers them. If I did, I'd be triggering them all the time.
Most of the time I can sit and stare at the to do list or project in front of me for long minutes trying to get the energy to dive in, like standing on the high diving board repeatedly counting to try trying to gather up get the courage to jump in.
One thing I really appreciate about my projects that is lacking from my work is the "once it's done, it's done" factor. Like cleaning, my work just keeps piling up. It's never done, there's always more and more and more. There's no sense of accomplishment where you can sit back and say it's done and admire your handiwork. There used to be. When volume was limited so that I could clean off my desk and take a deep breath, I felt great. On those days I went home smiling. But now there's often more on my desk at the end of the day than when I start. That's why I like working on the weekends - there's no email or new cases coming in. I can see the pile going down. During the week, the pile doesn't go down.
With renovation and other projects, there's a sense of accomplishment. A day later, a week later, a month later - I can look at what I've done and feel satisfied. It's there, it still looks great.
I look forward to the day when I can complete projects that generate money. Where something I build or got going months or years ago is still paying dividends. That must be a good feeling. I just have not ye been able to achieve that, yet. I will someday - if I can ever find the time!
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