I haven't posted in way too long, but I've been wrestling with some pretty major issues, and time just flies by. Unfortunately most of these issues have to do with my fms, so I guess there's no better place to voice them.
First off is my exhaustion level and simple all around fatigue and pain. I took just over a week off over Christmas and I noticed a HUGE difference in how I felt day to day. If I needed to take a pud day and rest it was fine and I got my body back on track relatively quickly. The problem is that I work and can't be on vacation all the time. I noticed right away when I returned to work that I just become more and more exhausted as each day passes and then by the time the weekend arrives, I need to spend the bulk of my 2 days off resting and recouperating....only to start all over on Monday. This takes a toll on my physically of course, but also on me mentally. My tolerance for noise and those unexpected details that come up in daily life. If it were just me at home, I would probably be able to skate by....but the fact is I have a husband and a 12 year old that I'm accountable to and want to share my time and energy with. When I'm exhausted and in pain, quite frankly I'm bitchy and that isn't working well in our household. My fms is the big elephant in the room that everyone is trying to side-step around. So the question here is....what are my options. Well I could cut back on my hours at work.....no wait I've already done that, and I need the health insurance. I could spend my time home in my room and keep my family insulated from my poor health and subsequent poor attitude.....nope that's not much of a way for any of us to live. So the only other thing I can come up with is to quit my job....but is that feasible? nope not really! We need the dual income, and we're stretched waaaaay thin with finances as it stands now.....so folks......what's the answer???? I just don't know! I feel so crappy about the situation that my illness puts us in and when I'm tired and hurting....that guilt is amplified to the max. I guess I don't have an answer yet ---- but my husband and I are working on trying to maybe, just possibly, on an outside chance.....of finding an answer that works for our family.......i'll keep you posted on that one.
So the second issue follows very closely on issue number one's heels. Quite frankly it's all so very convoluted and fuzzy. Hmmmmm kinda sounds like fms itself...."convoluted and fuzzy" lol
lol lol lol. Logistically trying to figure out the physical details of our dilemma is one thing; however just the same as my feelings are all over the map....so are the feelings of my husband, and 12 year old son. My husband feels helpless because he can't ease the disease, not to mention the fact that he too is justifiably angry with how the disease has changed me. Our 12 year old too, is angry and tired of fms.....and he feels responsible for my symptoms. So where is the magic balancing point on this teeter-totter of disease. I need to share with both of these guys, when I need to take a break and explain that's it's simply the disease doing what it does. None of us have control over it, or can make it better or worse. The problem is that I feel like we're constantly talking about it and our life is centered around the disease.
Reading over this last paragraph, I'm frustrated because I don't feel like I'm finding the right words to express how I feel.....or more importantly how the guys in my life feel. I know I need to name the disease when I'm having symptoms to clarify that it's not ME personally or THEM personally that are having a negative influence on how I feel....but at the same time it feels like that's all the time! I guess at this point all I can do is rest when I need to and not try to be the huge over achiever that I've always been. Maybe just shooting for some normalcy is all I should focus on right now. I just don't know.
sorry B.....sorry L.....
I wish you guys didn't have to deal with this!
hobbz
Friday, January 25, 2008
Sunday, January 6, 2008
Same issues----Different Perspective
I am a member of the National Fibromyalgia Association, as I'm sure I've mentioned before. Every month they put out an electronic newsletter this is an exerpt from one of the articles written by a patient with FM, that kind of rang true with me so I thought I would share it with you....
"Around 1998 my pain wasn’t very well controlled. I couldn’t understand the pain that had now moved to my legs and arms. A constant burning and stinging pain that never goes away. I recall lying on the floor with my head in my wife’s lap saying that I would rather die than have to live with the pain.....
For me, my pain is a constant reminder of both my ... FM. I don’t have a time during the day that it isn’t gnawing away at me. When I go to bed at night I have difficulty sleeping and routinely wake up feeling like I haven’t slept. But I have found two things that have kept me going from day to day with an eye on the future. First is having focus and setting goals. For me, having something meaningful to work toward and setting personal goals helps to keep my mind active and not focused on pain. The second and most important is my wife, Pat, who never gave up on me, never left my side, and always was there for me. She shared my defeats and sorrows but was a constant. She reveled in my victories and has shown and shared her true love"
These words rang true for me in a couple of different ways. One, it's a constant reminder to me that I am not "crazy" and the pain is very REAL. It's not something that comes and goes. Yes the intensitiy changes, depending on whether or not I'm in a bad flare up....but I have pain constantly 24/7 and it's just a manner of how well I can control it with meds and activity. Sometimes I feel very isolated and alone, and it's hard to focus on the big picture, but the author is right; it's key to keep focused on future goals or dreams, so as not to get bogged down by the pain. Which leads right into the second thing that hit me, that is the never failing support of a spouse who goes through ALL the ups and downs with you. They might not feel your pain, but they have their own pain, watching someone they love go through the litany of symptoms that come with fibro. There has been many a time that I have looked at my husband through tears, and said the very words " I'd rather die than go through this pain any longer". Do I really want to die? NO, but this disease just wears you down and when you're in a low point, it makes all the difference to know that you have someone to lean on, that will prop you up and take care of things for you until you can get to the other side.
So with that said, I would like to thank my husband Bret for EVERYTHING that he puts up with, and endures, as part of this disease. It doesn't just affect the person with the disease, It creates a whole new dynamic in any family, including ALL family members.
Thanks Bret for everything, I don't know where I would be without you!!!! From the last one to the next one chooch!
hobbz
"Around 1998 my pain wasn’t very well controlled. I couldn’t understand the pain that had now moved to my legs and arms. A constant burning and stinging pain that never goes away. I recall lying on the floor with my head in my wife’s lap saying that I would rather die than have to live with the pain.....
For me, my pain is a constant reminder of both my ... FM. I don’t have a time during the day that it isn’t gnawing away at me. When I go to bed at night I have difficulty sleeping and routinely wake up feeling like I haven’t slept. But I have found two things that have kept me going from day to day with an eye on the future. First is having focus and setting goals. For me, having something meaningful to work toward and setting personal goals helps to keep my mind active and not focused on pain. The second and most important is my wife, Pat, who never gave up on me, never left my side, and always was there for me. She shared my defeats and sorrows but was a constant. She reveled in my victories and has shown and shared her true love"
These words rang true for me in a couple of different ways. One, it's a constant reminder to me that I am not "crazy" and the pain is very REAL. It's not something that comes and goes. Yes the intensitiy changes, depending on whether or not I'm in a bad flare up....but I have pain constantly 24/7 and it's just a manner of how well I can control it with meds and activity. Sometimes I feel very isolated and alone, and it's hard to focus on the big picture, but the author is right; it's key to keep focused on future goals or dreams, so as not to get bogged down by the pain. Which leads right into the second thing that hit me, that is the never failing support of a spouse who goes through ALL the ups and downs with you. They might not feel your pain, but they have their own pain, watching someone they love go through the litany of symptoms that come with fibro. There has been many a time that I have looked at my husband through tears, and said the very words " I'd rather die than go through this pain any longer". Do I really want to die? NO, but this disease just wears you down and when you're in a low point, it makes all the difference to know that you have someone to lean on, that will prop you up and take care of things for you until you can get to the other side.
So with that said, I would like to thank my husband Bret for EVERYTHING that he puts up with, and endures, as part of this disease. It doesn't just affect the person with the disease, It creates a whole new dynamic in any family, including ALL family members.
Thanks Bret for everything, I don't know where I would be without you!!!! From the last one to the next one chooch!
hobbz
Friday, December 21, 2007
It's been awhile....I know....
So somehow life gets busy and I let time slip by without writing anything. The question I have is where does the time go???? Christmas is in 4 days for crying out loud....YIKES! I can't even tell you what I've been doing, I'm sure it was highly industrious though....not.
I have 10 days off over Christmas and I'm soooo excited. I can't even remember the last time I had that amount of time off. My husband is home from work, he works 2 weeks away and then spends 2 weeks home. So we get to spend some much needed time on our own for a week before he goes back to work. Once he leaves I'll have 3 glorious days on my own, which is VERY overdue. It's nice just to have time to recharge and not have to worry about anything. Stay up late and sleep in late, that's my kind of holiday.
I've been really achey the last week or so...not sure why, there probably isn't even a reason, fibromyalgia does what it wants when it wants so I'm just trying to roll with it. I don't like having to increase my pain meds though. I'm lucky that I only take Tramodol, which is non narcotic and non habit forming. I can also augment it with Tylenol...which has been pretty standard over the last few days. I find this stuff comes and goes, I'm just glad I've been off for the last 2 days, cuz it's awfully hard to concentrate with radiating pain all over. My in-laws gave us a heated mattress pad for Christmas....it has individual controls on each side MAN LET ME TELL YOU....it is truly amazing....it's like a giant heating pad. I've spent an hour each of the last three days just laying on the bed with it cranked on high, it really really helps. not to mention the fact that it's so very cool to get into a nice warm bed on a cold winter night.
I highly recommend one for anyone out there, fms or not...it's my new favorite toy.
Not much else to say, i'm not feeling overly chatty or inspired today, so I guess I'll wrap up this entry and catch ya later!
jan
I have 10 days off over Christmas and I'm soooo excited. I can't even remember the last time I had that amount of time off. My husband is home from work, he works 2 weeks away and then spends 2 weeks home. So we get to spend some much needed time on our own for a week before he goes back to work. Once he leaves I'll have 3 glorious days on my own, which is VERY overdue. It's nice just to have time to recharge and not have to worry about anything. Stay up late and sleep in late, that's my kind of holiday.
I've been really achey the last week or so...not sure why, there probably isn't even a reason, fibromyalgia does what it wants when it wants so I'm just trying to roll with it. I don't like having to increase my pain meds though. I'm lucky that I only take Tramodol, which is non narcotic and non habit forming. I can also augment it with Tylenol...which has been pretty standard over the last few days. I find this stuff comes and goes, I'm just glad I've been off for the last 2 days, cuz it's awfully hard to concentrate with radiating pain all over. My in-laws gave us a heated mattress pad for Christmas....it has individual controls on each side MAN LET ME TELL YOU....it is truly amazing....it's like a giant heating pad. I've spent an hour each of the last three days just laying on the bed with it cranked on high, it really really helps. not to mention the fact that it's so very cool to get into a nice warm bed on a cold winter night.
I highly recommend one for anyone out there, fms or not...it's my new favorite toy.
Not much else to say, i'm not feeling overly chatty or inspired today, so I guess I'll wrap up this entry and catch ya later!
jan
Tuesday, December 11, 2007
Tired!!!!!
I haven't written much lately, primarily because I've been dead dog tired. I go through flares with this disease, and apparently I'm in one right now. The pain has, for the most part, been manageable with meds....but tired????? oh man it's been a killer. It was to the point this morning that I had to turn the heat off in my jeep on the way to work, for fear that I couldn't stay awake. Let me tell you folks, I only have about a 10 minute drive. It's totally crazy, cuz I sleep a good 8 to 9 hours and I wake up completely exhausted. And no for those of you who are wondering, I'm not oversleeping.
I'm sure I've mentioned it before but people with fms suffer ALOT from being exhausted. Our bodies don't enter the restorative stages of sleep and thus can't heal themselves and refuel....it sucks so much to wake up and feel more tired than when you went to bed the night before.
It makes concentrating during my work day a challenge.....lol....luckily the people at work can laugh it off with me. Even that though, is a double edged sword. The main 3 people know that I have fibromyalgia, but they don't really know what that means, and they seem uncomfortable to ask. I haven't really broached it with them because I don't 1. want to push it on anyone, but 2. and more importantly for me, I don't want to sound like I'm whinning, complaining, or even making excuses. That's one of the big pitfalls with fms, is we don't LOOK sick in the least so people don't believe that we really are suffering. I think too, at least in my case, I get good at trying to keep up appearences and then just collapse when I get home, which isn't very healthy either.
It's quite a balancing act that I've gotten myself into. You can sense when people feel uncomfortable when you're talking about the disease, but on the other hand I want to increase awareness at the same time. So for right now anyways my tactic is to explain it if asked....or like now have a very personal tattoo that keeps me strong, but also allows for some sort of dialog when someone asks about it. But as predicted I'm a work in progress, and the struggles that fibro makes me face everyday, are ever fluctuating and changing. As are as evidenced here, my emotions and feelings toward this damn disease. For right now, anyways, I'm reasonably comfortable with how I'm dealing with and coping with the disease in my everyday life...but go figure....nothing stays static! poop!
that's my thought for today....may you all have a wonderful day !
hobbz
I'm sure I've mentioned it before but people with fms suffer ALOT from being exhausted. Our bodies don't enter the restorative stages of sleep and thus can't heal themselves and refuel....it sucks so much to wake up and feel more tired than when you went to bed the night before.
It makes concentrating during my work day a challenge.....lol....luckily the people at work can laugh it off with me. Even that though, is a double edged sword. The main 3 people know that I have fibromyalgia, but they don't really know what that means, and they seem uncomfortable to ask. I haven't really broached it with them because I don't 1. want to push it on anyone, but 2. and more importantly for me, I don't want to sound like I'm whinning, complaining, or even making excuses. That's one of the big pitfalls with fms, is we don't LOOK sick in the least so people don't believe that we really are suffering. I think too, at least in my case, I get good at trying to keep up appearences and then just collapse when I get home, which isn't very healthy either.
It's quite a balancing act that I've gotten myself into. You can sense when people feel uncomfortable when you're talking about the disease, but on the other hand I want to increase awareness at the same time. So for right now anyways my tactic is to explain it if asked....or like now have a very personal tattoo that keeps me strong, but also allows for some sort of dialog when someone asks about it. But as predicted I'm a work in progress, and the struggles that fibro makes me face everyday, are ever fluctuating and changing. As are as evidenced here, my emotions and feelings toward this damn disease. For right now, anyways, I'm reasonably comfortable with how I'm dealing with and coping with the disease in my everyday life...but go figure....nothing stays static! poop!
that's my thought for today....may you all have a wonderful day !
hobbz
Sunday, December 2, 2007
New symptom/different twist?
So yesterday, for the second time in a couple of months, I woke up feeling super stiff and sore. Now with fibro I always wake up sore, but this feels like what happens when you workout waaaaay too hard and all your muscles have been taxed to the max. It's truly a different twist on the disease for me. Normally my pain is a radiating pain in my legs mostly, but also my shoulders and neck. this new pain is every single muscle in my body! Like honestly, and I feel dumb saying this, but my fingers and toes are quite painful, even my facial muscles...and it just happens out of the blue. Today it's there a little bit, but nothing like yesterday. I don't know how to avoid it, since I haven't done anything out of the ordinary, so I've just used these days as a day to do a little self care and focus on me for awhile....hmmm that part of it isn't so bad.
As I'm typing this I'm wondering if it sounds like I'm always complaining, cuz that's honestly not my intent with this blog. On the other hand this disease is relentless and it's ALWAYS present in some way shape or form. My wish is to capture these moments when they happen so that those who are fortunate enough to not have this disease, can get a glimpse into what it's like to live with fms....and two that other fibromites cand hear, see, feel that they are not alone. We all have commonalities, even if the only common thread is that fms is completely unpredictable.
does any of this make sense? This is kind of like having a conversation with myself...which isn't all bad for me....but yikes now people have a glimpse into what goes on in my mind! lmao....scarey isn't it....insert gasping laughter here....
Migraines have been another concern for me lately (yes I'm jumping all over the place)....I've had some of the worst of my life! I've started working out at the hospital, and I'm hoping that will help relieve some of this mysterious pain...and cut down on the migraines. Nothing like blinding head pain...to knock you right out.
ok.....so i'm jumping all over....and seem to be having a hard time communicating any logical sequence of thoughts....not sure why...but the fog is ever present today....which yes is another symptom....jump....bounce....jump.....hey look a turtle.....jump....bounce.....ok enough is enough.
lol
hobbz
As I'm typing this I'm wondering if it sounds like I'm always complaining, cuz that's honestly not my intent with this blog. On the other hand this disease is relentless and it's ALWAYS present in some way shape or form. My wish is to capture these moments when they happen so that those who are fortunate enough to not have this disease, can get a glimpse into what it's like to live with fms....and two that other fibromites cand hear, see, feel that they are not alone. We all have commonalities, even if the only common thread is that fms is completely unpredictable.
does any of this make sense? This is kind of like having a conversation with myself...which isn't all bad for me....but yikes now people have a glimpse into what goes on in my mind! lmao....scarey isn't it....insert gasping laughter here....
Migraines have been another concern for me lately (yes I'm jumping all over the place)....I've had some of the worst of my life! I've started working out at the hospital, and I'm hoping that will help relieve some of this mysterious pain...and cut down on the migraines. Nothing like blinding head pain...to knock you right out.
ok.....so i'm jumping all over....and seem to be having a hard time communicating any logical sequence of thoughts....not sure why...but the fog is ever present today....which yes is another symptom....jump....bounce....jump.....hey look a turtle.....jump....bounce.....ok enough is enough.
lol
hobbz
Tuesday, November 20, 2007
back on track :}
So I'm back on track and the pissed off me, survived to see another day lol. There's been some research on anger and how it's somehow linked with Fibro, but I can't remember exactly what it was. I want to say that the lack of seratonin in our brains, affects how quickly we get angry....I dunno. I DO know that my patience/tolerance is EXTREMELY low over the last few years, and I'd actually prided myself on being a rather patient person, in my younger years. That could totally have been a false self image however.
I'm much more easily frustrated than I've ever been before, and once I get angry it's at a much more intense level than ever before. It's all so subjective though. It could simply be the demands of ever growing responsability at work, becoming a wife, and parent....or on the other hand it could be that I resent this disease and have no tolerance where it's concerned. I just know that my anger is definately different than it's ever been before, and I've heard others echo the same concerns.
That's the hard part with fms; it's so far reaching into every aspect of your life and your health, you just don't know what's normal and what's not. I know that before my diagnosis, I was convinced that all the pain that I felt was simply due to getting older and not being in my 20's anymore. But let's get real here I'm only 38, which in my opinion, for what it's worth, is just not that old.
There's all these things about my body that have just become normal to me, and I don't realize that they're not "normal" until I hear someone else ask about it, or even worse: when I'm talking about it to someone else that doesn't have fms, and they are looking at me like I'm from outer space. lol yikes! For instance I have random muscle "jerks" "spasms" "ticks" i don't know what you would call them. When I'm sitting still or especially laying down to go to sleep, my leg or arm or both will all of a sudden jump. It's kind of like those dreams you have of falling when your almost asleep and your whole body jumps, except it's just in my legs and arms. Well come to find out, someone on Fibrotalk posted a question about this very symptom, and tons of people report the exact same symptom. It's weird.
This week so far is going pretty well though. I'm really tired but not in bad pain, which I count as particularily good. I've started going to the gym at work....today was my first major work out. I did cardio and lower body weights, so we'll see how I feel in the next few hours. Exercise is supposed to help curb the symptoms of fms, but exertion causes undue pain and fatigue. The key is to get to the point where the benefits of exercise start out weighing the negative side effects. I'm remaining optimistic at this point.
I've lost 30 lbs in the last couple of months, but have kind of stalled so upping my exercise is the next stage to losing more weight. It's definately an uphill battle. I committed this year to getting my body back on track and as the year draws to a close, I am definately happy with my progress.....just keep trucking on, as they say!
later!
hobbz
I'm much more easily frustrated than I've ever been before, and once I get angry it's at a much more intense level than ever before. It's all so subjective though. It could simply be the demands of ever growing responsability at work, becoming a wife, and parent....or on the other hand it could be that I resent this disease and have no tolerance where it's concerned. I just know that my anger is definately different than it's ever been before, and I've heard others echo the same concerns.
That's the hard part with fms; it's so far reaching into every aspect of your life and your health, you just don't know what's normal and what's not. I know that before my diagnosis, I was convinced that all the pain that I felt was simply due to getting older and not being in my 20's anymore. But let's get real here I'm only 38, which in my opinion, for what it's worth, is just not that old.
There's all these things about my body that have just become normal to me, and I don't realize that they're not "normal" until I hear someone else ask about it, or even worse: when I'm talking about it to someone else that doesn't have fms, and they are looking at me like I'm from outer space. lol yikes! For instance I have random muscle "jerks" "spasms" "ticks" i don't know what you would call them. When I'm sitting still or especially laying down to go to sleep, my leg or arm or both will all of a sudden jump. It's kind of like those dreams you have of falling when your almost asleep and your whole body jumps, except it's just in my legs and arms. Well come to find out, someone on Fibrotalk posted a question about this very symptom, and tons of people report the exact same symptom. It's weird.
This week so far is going pretty well though. I'm really tired but not in bad pain, which I count as particularily good. I've started going to the gym at work....today was my first major work out. I did cardio and lower body weights, so we'll see how I feel in the next few hours. Exercise is supposed to help curb the symptoms of fms, but exertion causes undue pain and fatigue. The key is to get to the point where the benefits of exercise start out weighing the negative side effects. I'm remaining optimistic at this point.
I've lost 30 lbs in the last couple of months, but have kind of stalled so upping my exercise is the next stage to losing more weight. It's definately an uphill battle. I committed this year to getting my body back on track and as the year draws to a close, I am definately happy with my progress.....just keep trucking on, as they say!
later!
hobbz
Thursday, November 15, 2007
So I was in the middle of what I thought was a really good post....and then life hit me square in the forhead....and what happens, when life stresses you out????? Your damn disease kicks you in the ass...............................I absolutely hate that a simple stressful event can cripple me.....so I'm off to lick my wounds....
welcome to fms folks
h
welcome to fms folks
h
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