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
Monday, December 29, 2008
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
Thursday, October 16, 2008
I'm still here
It has definitely been awhile since my last post. I'm almost through my first official week of working from home, and I can see the difference already. Monday I spent the entire day at home and felt great. Wednesday I had meetings all day and was at work for over 5 hours....I was exhausted, it was back to how I felt daily going to work and slogging it out. I'm so thankful that today, I was able to get up with my son and do a couple hours of work before taking him to school. The beautiful part was that when I got home from dropping him off, and my legs were killing me and I was drop dead tired, I simply went back to bed. Wow, what a concept. I slept for a few hours and then got up and did some work. It's all at my leisure and while my body is cooperating. Obviously I can't get out of set meetings, but most days won't be 5 hours long like yesterday. I am so incredibly thankful for this opportunity.
Other than that, I've noticed the last couple of weeks that my mind has been enveloped by the "fibro fog", and I absolutely hate it. It's like I'm 4 steps behind everyone else, and it makes me feel so dumb. I play an online computer game where we talk with each other on headsets...my fog got so bad a couple of nights that the group I was playing with insisted that I was drunk...and in all seriousness I was just plain old fogged out me....How depressing! Our weather has turned decidedly winter-like, so I'm hoping it's just my body adjusting to the new weather. "they" say that fibromyalgia isn't a progressive disease, but honestly sometimes I wonder. When you're in a never ending (seemingly) flare, it's hard to remember that this too shall pass.
Like Cinders mentioned in her last comment, it's my online fibro links/buddies that keep me feeling normal and sane. I too go through periods of self-doubt and fear that this is all in my head. However it only takes a quick conversation with those I live with, or to get online with those that know first hand to realize that this is a very REAL disease. Who would make this stuff up, anyways? It's just easy to lose sight of what's real when your life and symptoms are so nebulous and ever changing.
Until next time...here's wishing good health to all!
hobbz
Other than that, I've noticed the last couple of weeks that my mind has been enveloped by the "fibro fog", and I absolutely hate it. It's like I'm 4 steps behind everyone else, and it makes me feel so dumb. I play an online computer game where we talk with each other on headsets...my fog got so bad a couple of nights that the group I was playing with insisted that I was drunk...and in all seriousness I was just plain old fogged out me....How depressing! Our weather has turned decidedly winter-like, so I'm hoping it's just my body adjusting to the new weather. "they" say that fibromyalgia isn't a progressive disease, but honestly sometimes I wonder. When you're in a never ending (seemingly) flare, it's hard to remember that this too shall pass.
Like Cinders mentioned in her last comment, it's my online fibro links/buddies that keep me feeling normal and sane. I too go through periods of self-doubt and fear that this is all in my head. However it only takes a quick conversation with those I live with, or to get online with those that know first hand to realize that this is a very REAL disease. Who would make this stuff up, anyways? It's just easy to lose sight of what's real when your life and symptoms are so nebulous and ever changing.
Until next time...here's wishing good health to all!
hobbz
Sunday, October 5, 2008
5 more days
Only 5 more days of working in the hospital and then it will be working from home in my jammies...lol...I totally cannot wait. It's like a HUGE weight has been lifted off of my shoulders. I'm so confident that this is the right decision, it's not very often I have this level of peace with a big life altering decision. It's even to the point that it doesn't bother me when others (who don't understand) aren't supportive.
It's funny how people get stuck in a way of thinking about you, and even when you have changed they still see you as someone you were a long time ago. I'm not saying this with any judgement, because I've been guilty of it many times myself...I just find it interesting, is all. I've had comments like you don't want to leave work, because they'll forget who you are...in reference to the fact that I'm 38yrs old and my focus should be on career right now. If it weren't for fibromyalgia, that is where my focus would be...but in many respects I'm thankful that I've been forced to look at my life and how I view "success" in a different light. There are others who feel that I've set myself up for days of wallowing in pain and self pity, but honestly I don't see it happening. I have so many plans, and I will STILL be working, all that's changing is my ability to take care of my physical needs better....woot woot.
Only time will tell, if this has been the right decision, but in the end, it will only matter to me, my husband, and my son. Everybody else's opinion is simply that, an opinion. Going through this most difficult decision process has really opened my eyes to what's important in life, and who and what really matters to me, when you cut out all the bullshit. I know that peoples varied reactions are based out of fear, and ignorance and I have to just let that be what it is. It's not my job to make others feel ok about my decision, the only job I can take on is to help educate them on how it really is day to day, living with this disease, and hope that their awareness and understanding improves.
I know that both my husband and I have really felt better about how we feel about the disease when we read the comments that are posted...or the blogs that I have listed. It's allowed us to feel "normal" again, and not so isolated by this hellish disease. It takes away EVERYTHING that you have, but now we know that we are NOT alone and are thinking ISN'T distorted. What we are going through is normal and there are others out there that have the same struggles and understand our pain....without that knowledge and support I shudder to think where we'd be today????
thanks all!
hobbz
It's funny how people get stuck in a way of thinking about you, and even when you have changed they still see you as someone you were a long time ago. I'm not saying this with any judgement, because I've been guilty of it many times myself...I just find it interesting, is all. I've had comments like you don't want to leave work, because they'll forget who you are...in reference to the fact that I'm 38yrs old and my focus should be on career right now. If it weren't for fibromyalgia, that is where my focus would be...but in many respects I'm thankful that I've been forced to look at my life and how I view "success" in a different light. There are others who feel that I've set myself up for days of wallowing in pain and self pity, but honestly I don't see it happening. I have so many plans, and I will STILL be working, all that's changing is my ability to take care of my physical needs better....woot woot.
Only time will tell, if this has been the right decision, but in the end, it will only matter to me, my husband, and my son. Everybody else's opinion is simply that, an opinion. Going through this most difficult decision process has really opened my eyes to what's important in life, and who and what really matters to me, when you cut out all the bullshit. I know that peoples varied reactions are based out of fear, and ignorance and I have to just let that be what it is. It's not my job to make others feel ok about my decision, the only job I can take on is to help educate them on how it really is day to day, living with this disease, and hope that their awareness and understanding improves.
I know that both my husband and I have really felt better about how we feel about the disease when we read the comments that are posted...or the blogs that I have listed. It's allowed us to feel "normal" again, and not so isolated by this hellish disease. It takes away EVERYTHING that you have, but now we know that we are NOT alone and are thinking ISN'T distorted. What we are going through is normal and there are others out there that have the same struggles and understand our pain....without that knowledge and support I shudder to think where we'd be today????
thanks all!
hobbz
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