I'm just not sure where the time goes lately. It just flies by and before I know it, it's been a month since my last post. Health wise I've been in a TON of pain lately, thanks to the fms...but otherwise my symptoms have been reasonably mild. I find it soooo interesting to see the difference between how I feel with only one main symptom and how I feel with full blown symptoms. It makes a world of difference, which sounds sad I'm sure to normals...but it makes perfect sense to my fibro mind. I never in my life thought I would consider it a good day, when my only problem is constant mind numbing pain in my body. lol
The worlds we live in are so complex and the things we can get used to and adapt to are amazing. It's times like these that I need to remember when I'm feeling beaten up by life and my fibro.
Lately the prevailing thought for me has been the struggle to define my illness as an "ok" thing in my life....or I guess in other words find acceptance. It seems just when I hit a comfort level with the hand I've been dealt something else comes along and I feel anger, blame, guilt etc all over again. The most recent incident was while talking with my husband about what behaviors we'd like to see the other one work on...particularly around anger. whoa does that sound as intense as it seems? Actually the conversation was a reasonably light one...but anyways, I digress. I brought up my issues/concerns and then his response was something like " anything that I would like to see changed can't be because your sick. Some things are unfair so I'm prepared to take my unfair share of problems...." When I questioned him further for clarification, the gist of what he was saying seemed to be that when I'm feeling crappy I'm blunt, curt, short with people, angry....because I'm in pain/exhausted...etc. He feels that since we can't get rid of my illness he is just stuck with this consequence. This makes me incredibly sad! One, I'm still accountable for my behavior healthy or not, but two, to hear him feeling as helpless as I do sometimes, makes me feel like I've burdened my family unnecessarily.
I don't want it to sound like he hates being with me or that he feels obligated, because that certainly isn't the case...but how can I make that up to him? Obviously I need to find a way to circumvent the cranky behavior when I'm feeling like shit...but that too brings up a whole can of worms. My first thought is that as soon as I start feeling pain or fatigue or overwhelmed by sound/pain/fatigue/smells/(you get the picture) I need to remove myself from the situation so that my family doesn't have to suffer as well. But then I'm terrified I'll be locked in my room 24/7 and will never be with my family. This brings up a whole lot of fears for me and obviously my husband. We've agreed to come back to the topic when he gets back from work...and I know we'll figure something out...but the guilt that I feel is still ever present.
It's totally unfair that I've gotten this disease, but life is unfair...I can cope with that (most days anyways)...but the fact that it's just as hard on my family, kills me. They see me suffering and just want to help....but they have no more control over this than I do. It's good to remember that this disease is a family affair. It can't just touch one person and leave everyone else alone. That's a pretty sobering thought.
I see how widespreading this disease is when it comes to dealing with various family members and friends. One I don't like bringing it up alot because I don't want to burden others, or sound like I'm whining or making excuses. On the other hand I really get the feeling that the whole subject makes people uncomfortable, so I try to pick and choose the times I discuss my illness with those close to me. Unfortunately my husband and son don't have that luxury. They see firbromyalgia in all it's glory. I can't hide it from them like I can everyone else. I can't paste on a smile and say everything's fine when it isn't. Anyone who has spent significant time in our house since my diagnosis, has gotten a glimpse of what life is like for the 3 of us, but reality is...only we know, what it's truly like to exist with this illness 24/7...for better or for worse, that's just the way it is.
Sometimes, I feel blessed to have discovered how important self care is, because my fibro doesn't ever give me a break. I've learned my limitations and when to say no, for my body's sake. If I over do something...fibro strikes with a vengeance....but I can weigh those risks and decide if a given situation is worth it, for me. How do I weigh the same risks when it comes to my spouse or child? Wow that's not so easy.
I'm blessed to have married my soul-mate and I'm secure in our relationship and his presence here in my life...but man I hate to see my fibro affect him in such a shitty way. Ouch. I guess my lesson for today is "powerlessness" if that's a word......
hmm....thinks that make you go hmmmm.....
hobbz
Saturday, February 14, 2009
Monday, January 26, 2009
finally recovered from the flu...
So since my last post I spent about 3 weeks with the flu from Hell! Ick. Hence I've been rather lax with my blogging on all fronts. I still have a cough but the fever, aches and general exhaustion seem to have left the body. So I'm back!
Thanks to ALL who left the awesome comments on my last entry. I've since then gained some perspective on the situation. I had already come to the conclusion that surgery is too extreme for me at this point...but all your points are totally valid, and well received. I've finished my trial of Mirapax to help with the restless legs and I'm elated to report that I think it's making a big difference in my sleep. I actually wake up because I've been in the same position too long,and that is unheard of for me! Usually I travel all over the bed and beat up my husband in the process. Now that I'm over the flu, I'm also noticing that I'm not as exhausted all the time. It's hard to tell though if that's just the ebb and flow of the fibro or that there is a difference with taking the meds. So we'll see how I feel in a couple of months.
I feel like I have a better perspective on things at this point and I know that part of that is not being so damn exhausted all the time. It makes life seem so much more livable when you have energy. I know that sounds totally idiotic, but it really is true, and when you are living in constant pain and exhaustion your reality becomes about the negatives and what you don't have, or can't do. Once some of the pain and tiredness go away...life looks completely different. No wonder I take drugs for depression....lol....I'm all over the map, as evidenced by my blogging. :)
What I know at this point is that I've started eating better and I'm more alert and able to function better mentally. Physically I'm trying to get moving more, but no major progress in that area yet. It's on my radar though and I hope to get into a schedule over the next couple of weeks that improves my exercise. I have to pace myself or I know my body will wage a revolution of biblical proportions and I'll fall flat on my face....wish me luck.
I hope everyone out there is feeling OK and that you all are able to have a modicum of joy in your life each day.
take good care!
hobbz
Thanks to ALL who left the awesome comments on my last entry. I've since then gained some perspective on the situation. I had already come to the conclusion that surgery is too extreme for me at this point...but all your points are totally valid, and well received. I've finished my trial of Mirapax to help with the restless legs and I'm elated to report that I think it's making a big difference in my sleep. I actually wake up because I've been in the same position too long,and that is unheard of for me! Usually I travel all over the bed and beat up my husband in the process. Now that I'm over the flu, I'm also noticing that I'm not as exhausted all the time. It's hard to tell though if that's just the ebb and flow of the fibro or that there is a difference with taking the meds. So we'll see how I feel in a couple of months.
I feel like I have a better perspective on things at this point and I know that part of that is not being so damn exhausted all the time. It makes life seem so much more livable when you have energy. I know that sounds totally idiotic, but it really is true, and when you are living in constant pain and exhaustion your reality becomes about the negatives and what you don't have, or can't do. Once some of the pain and tiredness go away...life looks completely different. No wonder I take drugs for depression....lol....I'm all over the map, as evidenced by my blogging. :)
What I know at this point is that I've started eating better and I'm more alert and able to function better mentally. Physically I'm trying to get moving more, but no major progress in that area yet. It's on my radar though and I hope to get into a schedule over the next couple of weeks that improves my exercise. I have to pace myself or I know my body will wage a revolution of biblical proportions and I'll fall flat on my face....wish me luck.
I hope everyone out there is feeling OK and that you all are able to have a modicum of joy in your life each day.
take good care!
hobbz
Monday, December 29, 2008
still searching for peace with fms
I haven't blogged much lately as I'm feeling pretty discouraged and I don't want this blog to just be about complaining, which seems to be all I'm doing lately. This disease is just so damn frustrating, and I'm really struggling with it right now.
A few months ago I had approached my doctor about getting some help with weight loss and her suggestion was for me to have a sleep study so we could find a way to improve my fatigue level, which in turn would help me be able to do more physically. Well I finally had that study this past weekend. It was what seemed like a very long night for me and I was thinking that they were going to ask me to come back again because I didn't sleep enough to get an accurate study. So the big surprise was that when I met with the doctor the next morning she said I actually slept like 94% of the night! Yikes! I don't know how to explain this and she looked at me like I was nuts...but I'm in a constant state of half awake half asleep. I can tell you all about them clearing the roads outside during the night, about the tech chatting on the phone in the next room, about how the tech was hooking up a cpap to the other patient next door...how my back was hurting so I tried to sleep on my side, but my legs hurt so I switched to the other side...how my mind wouldn't stop running so I just said the serenity prayer over and over and over again in my head. I was soooo exhausted after the study I was falling asleep waiting for the doctor...I went home and slept for 4 hours that afternoon and then went to bed at 7:30 pm and slept until 9:00 the next morning. So I ask you? how do their readings show that I slept normally???? It doesn't make sense. Oh and the other thing...they also diagnosed me with a new condition...PLMD "periodic limb movement disorder" which is basically like a milder form of restless legs syndrome and with that new diagnosis of course, comes yet another medication.
I'm feeling pretty dejected and lost at this point. What do you say when for the most part the test was normal and I'm almost asleep on my feet? I have another appt. with my family doc next monday to discuss this and by then hopefully the meds will kick in and help me not be disrupted by my legs jumping around all night. Hopefully! I'm to the point that I'm very seriously considering weight loss surgery. I'm on meds for reflux and high BP and I can't seem to get my weight down because i'm in so much pain...maybe if I could get surgery and get my weight down that would help with getting off at least 2 of my meds and getting moving a little easier and with less pain. I just don't know...but i'll talk to my doc about it all.
So while this post isn't a rant it certainly isn't all that positive either, but reality is that this IS my life with fibromyalgia, and until I can find some better alternatives to improve my health I'll have to find a way to make my peace with it...
still searching for peace....
hobbz
A few months ago I had approached my doctor about getting some help with weight loss and her suggestion was for me to have a sleep study so we could find a way to improve my fatigue level, which in turn would help me be able to do more physically. Well I finally had that study this past weekend. It was what seemed like a very long night for me and I was thinking that they were going to ask me to come back again because I didn't sleep enough to get an accurate study. So the big surprise was that when I met with the doctor the next morning she said I actually slept like 94% of the night! Yikes! I don't know how to explain this and she looked at me like I was nuts...but I'm in a constant state of half awake half asleep. I can tell you all about them clearing the roads outside during the night, about the tech chatting on the phone in the next room, about how the tech was hooking up a cpap to the other patient next door...how my back was hurting so I tried to sleep on my side, but my legs hurt so I switched to the other side...how my mind wouldn't stop running so I just said the serenity prayer over and over and over again in my head. I was soooo exhausted after the study I was falling asleep waiting for the doctor...I went home and slept for 4 hours that afternoon and then went to bed at 7:30 pm and slept until 9:00 the next morning. So I ask you? how do their readings show that I slept normally???? It doesn't make sense. Oh and the other thing...they also diagnosed me with a new condition...PLMD "periodic limb movement disorder" which is basically like a milder form of restless legs syndrome and with that new diagnosis of course, comes yet another medication.
I'm feeling pretty dejected and lost at this point. What do you say when for the most part the test was normal and I'm almost asleep on my feet? I have another appt. with my family doc next monday to discuss this and by then hopefully the meds will kick in and help me not be disrupted by my legs jumping around all night. Hopefully! I'm to the point that I'm very seriously considering weight loss surgery. I'm on meds for reflux and high BP and I can't seem to get my weight down because i'm in so much pain...maybe if I could get surgery and get my weight down that would help with getting off at least 2 of my meds and getting moving a little easier and with less pain. I just don't know...but i'll talk to my doc about it all.
So while this post isn't a rant it certainly isn't all that positive either, but reality is that this IS my life with fibromyalgia, and until I can find some better alternatives to improve my health I'll have to find a way to make my peace with it...
still searching for peace....
hobbz
Saturday, November 29, 2008
more of the same
My last post was a vent in frustration, so now today I feel like I should have something prophetic to say....hmmm....errr.....um.....yah.....so, nothing is coming. Work has been good, but I've had to spend alot of time at the hospital so it's not the same as working "from home". My health fibro wise has been sporadic. I'm really fighting some hellish stiffness and pain in my neck. I went to see the surgeon and he said it's par for the course and it's probably just because I'm doing more and more. But seriously folks....I'm a slug! I haven't been doing anything I don't normally do. My husband's neck is pain free and he had the surgery the same time as me and had double the work done....what an evil doer he is! lol
I know everyone's different and heals at their own pace...but my neck didn't hurt before surgery...so why does it hurt now...lol....who knows. My shoulder doesn't hardly hurt at all tho, and that is WONDERBAR! so I guess I shouldn't complain....speaking of complaints, I've been reading alot about gratitude lately and how it helps the soul and body alike. So every night before I go to bed I go through the entire alphabet and come up with one thing I'm grateful for that starts with each letter....and go figure it actually works. Just like it's hard to cry and smile at the same time...it's hard to be bitter and grateful at the same time. Now obviously that's not a rocket science type of discovery, but sometimes I think my head misses the most obvious of things/concepts...so I thought I'd throw it out there for folks!
try the alphabet gratitude list each day, or start a gratitude journal and write down 3 things your grateful for each day....see how it works.
hobbz
I know everyone's different and heals at their own pace...but my neck didn't hurt before surgery...so why does it hurt now...lol....who knows. My shoulder doesn't hardly hurt at all tho, and that is WONDERBAR! so I guess I shouldn't complain....speaking of complaints, I've been reading alot about gratitude lately and how it helps the soul and body alike. So every night before I go to bed I go through the entire alphabet and come up with one thing I'm grateful for that starts with each letter....and go figure it actually works. Just like it's hard to cry and smile at the same time...it's hard to be bitter and grateful at the same time. Now obviously that's not a rocket science type of discovery, but sometimes I think my head misses the most obvious of things/concepts...so I thought I'd throw it out there for folks!
try the alphabet gratitude list each day, or start a gratitude journal and write down 3 things your grateful for each day....see how it works.
hobbz
Thursday, November 13, 2008
back to routine
This week and next I have to be at work everyday...at a minimum of 6 hours...and my body/health has gone dramatically downhill. I can't sleep, eat, I hurt everywhere, and I'm just generally frustrated and in a fog. It doesn't seem to matter how short a break I get, the minute I start to feel better (like working from home) I manage to trick myself into believing that I can handle a week of regular work. It's just one week and not necessarily even 8 hours a day. What a joke! Here I am on Thursday home, by 1pm and ready to die. I know I've said the same things over and over, but this just flat out sucks! I feel so incredibly useless, when I realize (for the millionth time)...that I'm a shell of my former self, and really the amount that I can contribute to the world, my family, and my life is a pitifully small amount. It's so defeating!
Maybe I should have a better attitude, but a part of me says "why"! Why? should I feel good about this, and paste a smile on my face when I feel like total ass? Is there a good reason out there? Not right now! People just don't seem to understand how devastating this disease is, and that's a huge part of my frustration. I try to vent or talk to someone and I either get the..."pull yourself up by your boot straps" reaction or I get the " you're so screwed you need to go to counselling" reaction. Surly there's some middle ground somewhere. Most days I handle it well, but weeks like this not only wear my body down, but my mind and inner strength suffer too. Can't I have a bad week and whine, without being condemned????
I know all the warm fuzzy counselling crap....simply put at this moment, I just don't give a "fork"! I'm out of spoons and they seem to be on back order, which means I'm screwed. Reality is I HAVE to go to work, and that means that I WILL feel like poo, and there's no amount of counselling or boot strap pulling that's going to fix it.
Obviously I'm feeling really defeated and down...I just feel like I'm in a no win situation. I know others are worse off for me, and on good days, I can focus on that and be happy...but right now I just want to curl up in a ball and expire.
sorry for the vent.
hobbz
Maybe I should have a better attitude, but a part of me says "why"! Why? should I feel good about this, and paste a smile on my face when I feel like total ass? Is there a good reason out there? Not right now! People just don't seem to understand how devastating this disease is, and that's a huge part of my frustration. I try to vent or talk to someone and I either get the..."pull yourself up by your boot straps" reaction or I get the " you're so screwed you need to go to counselling" reaction. Surly there's some middle ground somewhere. Most days I handle it well, but weeks like this not only wear my body down, but my mind and inner strength suffer too. Can't I have a bad week and whine, without being condemned????
I know all the warm fuzzy counselling crap....simply put at this moment, I just don't give a "fork"! I'm out of spoons and they seem to be on back order, which means I'm screwed. Reality is I HAVE to go to work, and that means that I WILL feel like poo, and there's no amount of counselling or boot strap pulling that's going to fix it.
Obviously I'm feeling really defeated and down...I just feel like I'm in a no win situation. I know others are worse off for me, and on good days, I can focus on that and be happy...but right now I just want to curl up in a ball and expire.
sorry for the vent.
hobbz
Saturday, November 1, 2008
A whole extra hour!
This weekend is when we "fall back" and daylight savings time ends for another year. I love when we gain this extra hour, usually because it means one more hour of sleep. yippee! lol
Overall this week has gone pretty well, I'm still dead dog tired though. I was doing some reading this week on fms and how it affects sleep, and I found information on our circadian (know idea how to spell that) rhythm. It mentioned that people with fibro don't have a functioning rhythm in that aspect, which explains why my body is wide awake at 2 a.m., but I can't keep my eyes open at 10 a.m. I think I saw this on a message board somewhere. If I find it again I'll post it here as well, as it was very interesting.
I really don't have much to say today about fibro, which I'll take as a good sign lol and just leave this post at that.
take care all!
hobbz
Overall this week has gone pretty well, I'm still dead dog tired though. I was doing some reading this week on fms and how it affects sleep, and I found information on our circadian (know idea how to spell that) rhythm. It mentioned that people with fibro don't have a functioning rhythm in that aspect, which explains why my body is wide awake at 2 a.m., but I can't keep my eyes open at 10 a.m. I think I saw this on a message board somewhere. If I find it again I'll post it here as well, as it was very interesting.
I really don't have much to say today about fibro, which I'll take as a good sign lol and just leave this post at that.
take care all!
hobbz
Sunday, October 26, 2008
Sleepless in Anchorage
Wow, my fibro is in full blown flare up mode, luckily I'm entering week 3 of working from home and have been pretty much able to compensate for my body's lack of co-operation. I've been finding it next to impossible to sleep...the night just drags on and on without even a hint of sleep. Or the flip side is that I've "slept" (so to speak) through the night, but wake up even more exhausted than when I went to bed. It's a horrible cycle to be in and I hope it will end soon. The one bright light is that I know at some point it WILL end and I'll start getting some rest, but in the meantime, I have to really be careful to not over extend myself, while sleep is scarce.
I've definitely had lots of time to read and catch up on just "me" time, which I'm finding is more and more necessary. I've gone most of my life putting others first and me last, however that doesn't work so well with fibromyalgia. It's more important than ever to keep myself focused and centered so that I have the energy and strength to be there for my family and loved ones. I guess you can find a blessing within any dark cloud, huh.
It is still hard though, to feel so isolated when you're not around others who are struggling with the disease. Once I get into a routine with my working from home, I really want to start up a face to face support group for others suffering from FMS. I know it would make a huge difference for me, so I can only postulate that it would do the same for others. It seems as though, there is a huge gap in terms of lack of support for family members of those of us who suffer from fibro. They go through it all day to day with us, but find it equally as hard to get any face to face support from other family members dealing with the same issues. Maybe that can be something I look at when setting up a support grp. Maybe we have a family members group run concurrently so that it becomes a family healing process....I don't know yet, but those are some of the ideas I'm thinking of.
Obviously I have a lot of thinking time at night so I have to be careful to not bite off more than I can chew. I've requested some information online, for starting local support groups, and I assume it will outline some of these same concerns and how others have dealt with them. In the past I would have seen going to a support group as a sign of weakness (shaking my head as I type), but now I see it in the exact opposite light. I think it takes strong, courageous person to walk into a room of strangers, and say "I need help"...hopefully I'll find a way to create a safe and welcoming environment for people to do just that. Nobody, regardless of whether you suffer from a chronic illness or not, can survive in a bubble all their own. It's important to ask for help when you need it, AND to lean on others when you can't do it alone. Through the process of learning to live WITH and not in spite of my disease, I have come to rely on others in a way that is not always what I would want in my "ideal" world, But thank god I have two guys in my life that are there for me day and night no matter what I need to help me. I'm not sure what I would do without them!
until next time...
hobbz
I've definitely had lots of time to read and catch up on just "me" time, which I'm finding is more and more necessary. I've gone most of my life putting others first and me last, however that doesn't work so well with fibromyalgia. It's more important than ever to keep myself focused and centered so that I have the energy and strength to be there for my family and loved ones. I guess you can find a blessing within any dark cloud, huh.
It is still hard though, to feel so isolated when you're not around others who are struggling with the disease. Once I get into a routine with my working from home, I really want to start up a face to face support group for others suffering from FMS. I know it would make a huge difference for me, so I can only postulate that it would do the same for others. It seems as though, there is a huge gap in terms of lack of support for family members of those of us who suffer from fibro. They go through it all day to day with us, but find it equally as hard to get any face to face support from other family members dealing with the same issues. Maybe that can be something I look at when setting up a support grp. Maybe we have a family members group run concurrently so that it becomes a family healing process....I don't know yet, but those are some of the ideas I'm thinking of.
Obviously I have a lot of thinking time at night so I have to be careful to not bite off more than I can chew. I've requested some information online, for starting local support groups, and I assume it will outline some of these same concerns and how others have dealt with them. In the past I would have seen going to a support group as a sign of weakness (shaking my head as I type), but now I see it in the exact opposite light. I think it takes strong, courageous person to walk into a room of strangers, and say "I need help"...hopefully I'll find a way to create a safe and welcoming environment for people to do just that. Nobody, regardless of whether you suffer from a chronic illness or not, can survive in a bubble all their own. It's important to ask for help when you need it, AND to lean on others when you can't do it alone. Through the process of learning to live WITH and not in spite of my disease, I have come to rely on others in a way that is not always what I would want in my "ideal" world, But thank god I have two guys in my life that are there for me day and night no matter what I need to help me. I'm not sure what I would do without them!
until next time...
hobbz
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