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
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