So life has been like a roller coaster ride lately. Lots of ups and downs, (I never have liked those things lol). The fam and I came down with the Swine Flu so that put me out of commission for 8-10 days....very tired and bad headache are all I can say. Luckily however we've recovered and life is moving on.
I've been in and out of flares lately and cutting back on my meds has really made sleeping difficult. My legs are either in a ton of pain or the restless leg thing is driving me crazy. I haven't found anything that helps my jumpy legs other than medicine so it's been a long month. My family doc was telling me about the new drug Savella (sp?). She says that she has switched alot of her fibro patients over to it, with stunning results, some are even hiking and jogging daily!!!!! Can you believe that? My husband just about fell off his chair when she said that. So right now while we're trying to get pregnant, isn't the time to start a new drug, but hopefully by this time next year I'll be able to give it a whirl.
Does anyone out there have any experience with Savella, I really haven't had much time to do any research on it, but I'll keep you posted as I do.
Sadly this is just a short post as I really need to head to bed, but I wanted to check in and let folks know I'm still alive. I'll try to post more in the next week or so, I've just been so busy sleeping lately I haven't had much motivation to chat. Sad huh.....lol
hobbz
Sunday, September 20, 2009
Wednesday, August 12, 2009
:)
So my positive attitude is still intact, but I'm in a bit of a flare. It's been 4 or 5 days since I've had more than a couple of hours of sleep and my back is on fire. Reality bites. lol
The good thing is that I knew this is coming...and just as it snuck up on me....it too will sneak away again for a break. I'm learning to ride the waves of this disease, and while this valley isn't any fun...I've come to learn how to take care of myself and ride the wave back up to the top.
Right now my son and husband are both out of town...but as of Sunday they will both be back...hopefully I'll be able to keep focusing on taking care of myself with the fam back at home. It's hard to feel like I'm taking away from them to take care of me...but I've recently accepted the fact (in my heart, not just my head), that I'm off no use to either of them if I can't take care of myself.....so wish me luck.
hobbz
The good thing is that I knew this is coming...and just as it snuck up on me....it too will sneak away again for a break. I'm learning to ride the waves of this disease, and while this valley isn't any fun...I've come to learn how to take care of myself and ride the wave back up to the top.
Right now my son and husband are both out of town...but as of Sunday they will both be back...hopefully I'll be able to keep focusing on taking care of myself with the fam back at home. It's hard to feel like I'm taking away from them to take care of me...but I've recently accepted the fact (in my heart, not just my head), that I'm off no use to either of them if I can't take care of myself.....so wish me luck.
hobbz
Thursday, July 30, 2009
A change of perspective....
Once again it's been awhile since my last post. I've been, one, enjoying the amazing summer weather we've had this year! It is truly amazing to live in a place as beautiful as Alaska in the summer time. Two, I've been doing alot of self discovery and work on my self image. Actually I think I've actually made some significant headway in this area.
I will be 40 in November and I'm starting to think I'm going through some sort of mid-life crisis, but in a good way...definitely not bad. I've really started to come into my own over the past 3 or 4 months, and it's feeling really amazing! I'm coming to grips with issues that have mired me down for as long as I can remember, and it's lifted an amazing weight off my shoulders.
As far as my fibro is concerned, it is as normal, ever fluctuating. I have a great week and then it's followed by two weeks of pain and fatigue like no other. The thing is though, that I've started to see that I don't have to be defined by my inability to do things. Don't get me wrong, I still get pinnacly frustrated when my body doesn't co-operate, but I've started being easier on myself about it. I still am mourning the loss of my "old" self, but somehow it doesn't seem quite so overwhelming as it has in the past. This my friends is major progress for me, and I'm pretty darn proud of myself! Yea me!
I've joined a gym and have been attending pretty regularly. Of course at first I had huge plans to go everyday and become skinny and buff in no time at all....(duh...will I ever learn? lol). However I'm slowly, ever so slowly learning to give myself a break and go to the gym when it's going to be helpful and not detrimental to my body and well being. I'm still at the point where my body rebels to some extent after a workout, but I am also far enough along into the process that I'm also starting to feel a little bit more energized after each venture into the gym. So I'll keep slugging away and get to my goals when I get there. I have to be careful to not compare the "old" me to the "new" me, and focus on the positives that I'm gaining. Overall however I'm very happy with my progress and new found focus.
I'm so excited to feel like I'm finally climbing out of the hole, that represents all the losses I feel surrounding this stupid disease. I'm to a point where I'm ok with me as I am. My weight is way higher than I'd like, but there is good reason for that and I'm working on it. I can't work the hours or at the intensity that I used to, but now I've found hobbies that are relaxing and fill me up instead of take away from me. I can't hike all the trails I'd like to, but I can spend a day fishing with my husband and be supported for the next two days while I recover. Right now it's pretty good to be me...fibro and all.
Without this disease I don't know if I would have gotten to this realization, I do know that it would have taken me alot longer to get to this point without the fms. I'm happy to be me, and I really don't care what others think. My fibro tattoo has really allowed me to spread awareness to others, and that is so rewarding! I have a new set of friends here in Alaska that I have opened up to, and they understand and support me with the fibro...it's so cool to have somebody phone just to see how I'm feeling today. I've spent the last 4 years worried about hiding my disease for fear of judgement and now I feel totally empowered to be me...fibro and all...and to not worry about anyone else's opinion. My new motto is "it's none of my business what you think of me"
As long as I'm living my life to the fullest I'm doing good. This disease has challenged me to do this, and now I accept the challenge as opposed to resent it. This is a subtle change in thought....but a huge leap of faith and attitude.
THANKS TO ALL WHO HAVE SUPPORTED ME THUS FAR! You know who you are and I'll continue to lean on you...but maybe now, I can be happier and more comfortable with me and my situation.
My name is Jan...and I have Fibromyalgia....so what!
hobbz
I will be 40 in November and I'm starting to think I'm going through some sort of mid-life crisis, but in a good way...definitely not bad. I've really started to come into my own over the past 3 or 4 months, and it's feeling really amazing! I'm coming to grips with issues that have mired me down for as long as I can remember, and it's lifted an amazing weight off my shoulders.
As far as my fibro is concerned, it is as normal, ever fluctuating. I have a great week and then it's followed by two weeks of pain and fatigue like no other. The thing is though, that I've started to see that I don't have to be defined by my inability to do things. Don't get me wrong, I still get pinnacly frustrated when my body doesn't co-operate, but I've started being easier on myself about it. I still am mourning the loss of my "old" self, but somehow it doesn't seem quite so overwhelming as it has in the past. This my friends is major progress for me, and I'm pretty darn proud of myself! Yea me!
I've joined a gym and have been attending pretty regularly. Of course at first I had huge plans to go everyday and become skinny and buff in no time at all....(duh...will I ever learn? lol). However I'm slowly, ever so slowly learning to give myself a break and go to the gym when it's going to be helpful and not detrimental to my body and well being. I'm still at the point where my body rebels to some extent after a workout, but I am also far enough along into the process that I'm also starting to feel a little bit more energized after each venture into the gym. So I'll keep slugging away and get to my goals when I get there. I have to be careful to not compare the "old" me to the "new" me, and focus on the positives that I'm gaining. Overall however I'm very happy with my progress and new found focus.
I'm so excited to feel like I'm finally climbing out of the hole, that represents all the losses I feel surrounding this stupid disease. I'm to a point where I'm ok with me as I am. My weight is way higher than I'd like, but there is good reason for that and I'm working on it. I can't work the hours or at the intensity that I used to, but now I've found hobbies that are relaxing and fill me up instead of take away from me. I can't hike all the trails I'd like to, but I can spend a day fishing with my husband and be supported for the next two days while I recover. Right now it's pretty good to be me...fibro and all.
Without this disease I don't know if I would have gotten to this realization, I do know that it would have taken me alot longer to get to this point without the fms. I'm happy to be me, and I really don't care what others think. My fibro tattoo has really allowed me to spread awareness to others, and that is so rewarding! I have a new set of friends here in Alaska that I have opened up to, and they understand and support me with the fibro...it's so cool to have somebody phone just to see how I'm feeling today. I've spent the last 4 years worried about hiding my disease for fear of judgement and now I feel totally empowered to be me...fibro and all...and to not worry about anyone else's opinion. My new motto is "it's none of my business what you think of me"
As long as I'm living my life to the fullest I'm doing good. This disease has challenged me to do this, and now I accept the challenge as opposed to resent it. This is a subtle change in thought....but a huge leap of faith and attitude.
THANKS TO ALL WHO HAVE SUPPORTED ME THUS FAR! You know who you are and I'll continue to lean on you...but maybe now, I can be happier and more comfortable with me and my situation.
My name is Jan...and I have Fibromyalgia....so what!
hobbz
Tuesday, June 16, 2009
Coming to grips with a chronic illness
As some of you I'm sure have noticed that over the last year or so I really am having a seemingly impossible time coming to terms with my illness. It's ever changing and constantly reminding me of it's evil presence in my life...I like this excerpt that I read today...
" The sad reality is that living with fibromyalgia is, itself, stressful. The early period just after diagnosis is the toughest because you have so much to learn and deal with. But the stress doesn't end there. You have an illness that changes from day to day, and things need to get done in a world that doesn't slow down when you can't walk very fast. Learning to accept and manage as much stress as possible will help you in your recovery process.
Stress is often defined as a perceived inability to deal with a difficult situation. Yet stress is also the body's reaction to change, which means that it can be a catalyst for new thing and new behaviors. The challenge can be physical or mental - the definition is purposely broad. And, because each of us has our own perception of what a difficult situation is, what triggers stress is different for all of us.
It's hard to separate fibromyalgia from stress. It's stressful to be in pain, worse to have unpredictable symptoms... In fibromyalgics, chronic pain is the number one source of stress. That doesn't even take into consideration the stressfulness of the fact that you have had a complete change in your life from your fibromyalgia. It's even more stressful to have cognitive problems and push yourself through fatigue. Add to this the normal fibromyalgia symptom of anxiety and nervousness and you can see the problem. Even without any added stress you're using up a lot of energy that you can't spare. Here's what you should know: Stress is in the body and the mind. It makes us feel anxious, short-tempered, and overwhelmed. It's a vicious cycle that makes every single symptom we have worse."
---pg 123 "The First Year - Fibromyalgia" by Claudia Craig Marek
I think this reading makes several good points...it's kind of like which came first the chicken or the egg? In this case it's which came first today, the stress or the fibro? It's an ever changing circular dance between the two. I seem to constantly beat myself up for feeling "anxious, short-tempered, and overwhelmed" as the author wrote...I didn't see these "defects" as linked to my chronic condition/situation. I keep feeling like I've always been able to handle these situations before, why now is it so hard? What's wrong with me? and that's a shitty attitude to have!
Part of my struggle is that a huge part of my heart doesn't want to come to terms with this illness...it's unacceptable and how does one go about making the unacceptable...acceptable? I know that in order to pull off that miracle, my attitude is going to have to change dramatically. Talk about being anxious and overwhelmed.
I'm clearly my own worst enemy. I try to pretend that all is ok to the outside world and that is problem number one. I have to accept the situation that I'm in and make sure that others that are involved with me know that. I fear so much for burdening those around me, especially my friends and family. I know how hard it is for my son and husband...and I feel terrible guilt about it...I don't want to spread that dysfunction to others. sigh
I've got to get out of my head and put it out there. I've taken good steps at work and set some major boundaries in terms of how much I'll take on and how many hours I can realistically work, and low and behold...the earth is still spinning....who'd have thunk it? lol
The hard part now is being more vocal in other parts of my life. I don't bring up my fibro hardly ever...the only time I talk about it is when someone else brings the topic up. I don't want people to think I'm whining...on the flip side is that if I hold it all in, I end up whining on here or to my husband, which is NOT ok to continue....
Oop ack ick...where to go from here....the struggle continues...ponder ponder ponder.....
hobbz
" The sad reality is that living with fibromyalgia is, itself, stressful. The early period just after diagnosis is the toughest because you have so much to learn and deal with. But the stress doesn't end there. You have an illness that changes from day to day, and things need to get done in a world that doesn't slow down when you can't walk very fast. Learning to accept and manage as much stress as possible will help you in your recovery process.
Stress is often defined as a perceived inability to deal with a difficult situation. Yet stress is also the body's reaction to change, which means that it can be a catalyst for new thing and new behaviors. The challenge can be physical or mental - the definition is purposely broad. And, because each of us has our own perception of what a difficult situation is, what triggers stress is different for all of us.
It's hard to separate fibromyalgia from stress. It's stressful to be in pain, worse to have unpredictable symptoms... In fibromyalgics, chronic pain is the number one source of stress. That doesn't even take into consideration the stressfulness of the fact that you have had a complete change in your life from your fibromyalgia. It's even more stressful to have cognitive problems and push yourself through fatigue. Add to this the normal fibromyalgia symptom of anxiety and nervousness and you can see the problem. Even without any added stress you're using up a lot of energy that you can't spare. Here's what you should know: Stress is in the body and the mind. It makes us feel anxious, short-tempered, and overwhelmed. It's a vicious cycle that makes every single symptom we have worse."
---pg 123 "The First Year - Fibromyalgia" by Claudia Craig Marek
I think this reading makes several good points...it's kind of like which came first the chicken or the egg? In this case it's which came first today, the stress or the fibro? It's an ever changing circular dance between the two. I seem to constantly beat myself up for feeling "anxious, short-tempered, and overwhelmed" as the author wrote...I didn't see these "defects" as linked to my chronic condition/situation. I keep feeling like I've always been able to handle these situations before, why now is it so hard? What's wrong with me? and that's a shitty attitude to have!
Part of my struggle is that a huge part of my heart doesn't want to come to terms with this illness...it's unacceptable and how does one go about making the unacceptable...acceptable? I know that in order to pull off that miracle, my attitude is going to have to change dramatically. Talk about being anxious and overwhelmed.
I'm clearly my own worst enemy. I try to pretend that all is ok to the outside world and that is problem number one. I have to accept the situation that I'm in and make sure that others that are involved with me know that. I fear so much for burdening those around me, especially my friends and family. I know how hard it is for my son and husband...and I feel terrible guilt about it...I don't want to spread that dysfunction to others. sigh
I've got to get out of my head and put it out there. I've taken good steps at work and set some major boundaries in terms of how much I'll take on and how many hours I can realistically work, and low and behold...the earth is still spinning....who'd have thunk it? lol
The hard part now is being more vocal in other parts of my life. I don't bring up my fibro hardly ever...the only time I talk about it is when someone else brings the topic up. I don't want people to think I'm whining...on the flip side is that if I hold it all in, I end up whining on here or to my husband, which is NOT ok to continue....
Oop ack ick...where to go from here....the struggle continues...ponder ponder ponder.....
hobbz
Saturday, May 30, 2009
National Fibromyalgia Association: Adjust Your Anger Management Style--Reduce Your Pain
National Fibromyalgia Association: Adjust Your Anger Management Style--Reduce Your Pain
I'm posting this link to an article about how suppressing your anger can lead to not only more fibro pain, but also increased anger....
This article really jumped out at me because I've somewhat subconsciously noticed that my anger has definitely intensified over the last few years. I used to be the most patient person in the world and now I find I live with alot of unresolved anger. Things that would have never bothered me before...can now insight me to great rage. I never really wanted to admit this to myself let alone to the world at large, but it's been a nagging thought in the back of my brain.
Has anyone else experienced this? What do you think of the article? I'd be very excited to hear the perspective of others on this topic
hobbz
I'm posting this link to an article about how suppressing your anger can lead to not only more fibro pain, but also increased anger....
This article really jumped out at me because I've somewhat subconsciously noticed that my anger has definitely intensified over the last few years. I used to be the most patient person in the world and now I find I live with alot of unresolved anger. Things that would have never bothered me before...can now insight me to great rage. I never really wanted to admit this to myself let alone to the world at large, but it's been a nagging thought in the back of my brain.
Has anyone else experienced this? What do you think of the article? I'd be very excited to hear the perspective of others on this topic
hobbz
Tuesday, May 26, 2009
Malcontent
I'm in a flare from hell, which has me honestly raging against this fricking disease! I try so hard to keep perspective, but right now my only thought is how exhausted I am from hurting and exhaustion...lol. I am barely sleeping at all and my legs feel like they are both being crushed AND are in a meat grinder, not to mention my neck and shoulder are hideously painful.
Sometimes I just want it all to go away! How does one keep perspective during a flare???? I just don't know. I know that it will pass at some point, but I'm tired of being 39 and alternating days between using a cane to keep my legs in check and not using the cane because my shoulder is killing me. I hate it I hate it I hate it!
But what can I do, but rant and rave, then suck it up and keep moving. Which I'm going to do, but really i have no choice here. And maybe that's what pisses me off the most. The fact that I have no control in what this disease is going to do, or when it's going to strike. I know there are folks that are much worse off than me, but right now I'm too marred in self-pity to care. yikes there's a statement!
so here I sit....frustrated and angry...and exhausted, and in pain...and fighting to not give up hope.
chronic pain and illness is constantly there no matter what....how does one finally come to terms with that? I go through periods where I think I've accepted my situation and I've laid all these feelings to rest. Maybe that is the problem....I expect to be able to lay it to rest, and not feel crappy about it anymore. Looking at that in type, it dawns on me that my expectations are warped...go figure. I need to find a way to accept that things WILL indeed suck in times of flares/pain/exhaustion....I'm just not sure how to do that just yet.
i'll keep you posted on that one.
hobbz
Sometimes I just want it all to go away! How does one keep perspective during a flare???? I just don't know. I know that it will pass at some point, but I'm tired of being 39 and alternating days between using a cane to keep my legs in check and not using the cane because my shoulder is killing me. I hate it I hate it I hate it!
But what can I do, but rant and rave, then suck it up and keep moving. Which I'm going to do, but really i have no choice here. And maybe that's what pisses me off the most. The fact that I have no control in what this disease is going to do, or when it's going to strike. I know there are folks that are much worse off than me, but right now I'm too marred in self-pity to care. yikes there's a statement!
so here I sit....frustrated and angry...and exhausted, and in pain...and fighting to not give up hope.
chronic pain and illness is constantly there no matter what....how does one finally come to terms with that? I go through periods where I think I've accepted my situation and I've laid all these feelings to rest. Maybe that is the problem....I expect to be able to lay it to rest, and not feel crappy about it anymore. Looking at that in type, it dawns on me that my expectations are warped...go figure. I need to find a way to accept that things WILL indeed suck in times of flares/pain/exhaustion....I'm just not sure how to do that just yet.
i'll keep you posted on that one.
hobbz
Thursday, May 21, 2009
must sleep
So, it's 4 a.m. and I still haven't fallen asleep. ACK. My body will not sleep and is wracking my muscles with pain! I also suffer from restless legs syndrome, but tonight has been like my whole body can't stay still. I feel like I'm going frickin crazy!!!!!!!! I've tried breathing, reading, listening to music, listening to gregorian chants, hot shower, more breathing, flipping and flopping...and now I'm surfing the net.
God I hate this disease!!!!!!!!
Tomorrow is going to suck! eeerrrrr that is to say today is going to suck...since my son gets up at 6 a.m.....wish me luck
hobbz
God I hate this disease!!!!!!!!
Tomorrow is going to suck! eeerrrrr that is to say today is going to suck...since my son gets up at 6 a.m.....wish me luck
hobbz
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