I'm trying to learn to do better with what I have, so I picked up a book written by Julie Morgenstern called "Making Work work". Even though I don't officially have a job, I do tinker in business at home, and I have watched her on a video about organization and loved her personal, make-sense style, so I figured if she wrote a book, I wanted to read it. I'm still in the beginning of the book, and already I am impressed.
I took the test in the beginning and given the total points I scored, I was in the category "Treading Water" and close to "Drowning". How did she know? I don't even have a job and yet the description fit: "You feel under constant pressure and stress,..." Then it gave instructions on what parts of the book to read to find relief. A quick skim of those chapters immediately showed me my errors-I'm not taking time to have fun and do things I love! Why is this lesson so hard for me? I have ended up in hospitals with total breakdowns and EVERY TIME came out with the same prescription. Do something fun! Stop being so serious and feeling guilty and enjoy your life!
I think it's hard for me now especially because I have so little time during the day to accomplish what I want to do. OK, I know that everyone has the same amount of time, but what I mean is I need more rest and recovery and must make allowances for Fibromyalgia. So when I can do things, usually a couple hours most days, I feel like I need to be doing important things like paying bills, improving my business, doing some kind of cleaning, etc. IMPORTANT THINGS. I don't have time for the unimportant things I love like painting, taking pictures, writing, singing, spending quality time with family, date nights, etc. UNIMPORTANT THINGS.
We'll get to that in a minute, but to finish my original thought, Julie Morgenstern's point is when we are constantly working, we get burned out, tired, unmotivated, lose creativity, friends, family and health, which of course in the long run, this affects our work.
When I look at my brief list of IMPORTANT THINGS, I almost laugh because these might be necessary at certain times, or preferable to have done, and there should be a time and place in my life for them, but are these things really so important that they should take precedence over my so-called unimportant things?
BALANCE, balance, BALANCE, balance, BALANCE!
I think one of the problems is I have the wrong labels. Instead of calling them important or unimportant, I think I need to see them as equally valuable in different ways. Because obviously all the things I listed as unimportant feed very important parts of my life-my soul, my loved ones, my health...
I realized that I have a guilty place in my mind that says something like "you need to be working every spare minute." I don't know if I got it put there as a child, or from something I decided by myself at an early age, but it's a message that is hard for a Fibromyalgite to bear. How can I enjoy my life when there is so much work to be done! Is this what an A type personality is?
I wonder if other people feel this way, but with me, when I sleep late, I feel guilty. When I can't function for the first two hours in the morning, I feel guilty. When I stay up late I feel guilty. When I desperately need time to lie down I feel guilty. Where is all this guilt coming from?
I remember asking my Dad if he ever knew anyone who had Fibromyalgia, and he thought for a minute and said, "You know, _____ always told us he had something like that, but we all thought he was just lazy. But now that I know more about it, I think he might have had it."
I appreciated my Dad's honesty, because that's exactly what many people think, and some people even think that Fibromyalgia is a made-up excuse to be lazy! Because it is what is known as an "invisible illness" (you can't see it) people don't know I have Fibromyalgia. From the outside looking in, it could very well look like I am lazy. I get up late, don't do anything till afternoon, don't clean my house, or work outside the home, and I accept some help from the government. But on the inside, I know I am doing the very best I can each day, every minute.
Fibromyalgia is the best and worst teacher I've ever had. I spend more time thinking and praying than anyone I know. I'm learning that no matter whose fault it is, if I let myself get upset, I will pay the price, so I'm learning to rein in my temper-not easy for a passionate woman! If I overdo trying to clean my house to impress someone, again, it is me who pays the price. If I get stressed and anxious at trying to be perfect, it is me who gets sick. I might want to wear fancy clothes and high heels to impress others, but I'm the one who will feel the pain. If I do ANYTHING to impress or stress for someone else, I lose.
Of course doing things for my kids or husband, or taking time to comfort a friend when I just want to lie down is worth the cost. And there are some things we do for others that actually refresh us, like charity work or going somewhere with my grand kids, etc. But there is a difference in doing good things for certain people, and doing things to IMPRESS people.
I guess that's the biggest lesson. If my mind, body, and soul are working together, then I'm doing something right. If I am hurting, it's time to re-evaluate and ask is it worth it. Prioritizing who and what are most important to me and then balancing my time and energy to those priorities and everything else will just have to wait.
I think Fibromyalgia is as much a spiritual situation as it is a physical ailment because when people first realize they have it they want to fight it and get back to "normal". But as I get older, the lessons I've learned have slowed me down and made me think and brought me to my knees-exactly where God wants me. Dependent on Him, doing it His way.
"What’s most important hardly ever feels urgent. We have to make a choice to live differently and with purpose."
------Holloy Gerth
Saturday, December 1, 2012
Thursday, September 6, 2012
INVISIBLE STONES
Undecided. Really, it's more like making a decision I don't want to necessarily make. I'm thinking of closing this blog. The last time I wrote was in May, over 3 months ago. I feel like I am not being true to those who read this blog by not keeping it updated more often.
Is it my "all or nothing" syndrome popping up again? I've been told by every therapist I've seen that I have it. Not sure what the technical diagnosis is, but it means either I do something all the way, or I don't do it at all. Anybody else like that? I call it being honest.
I don't know if this is a Fibromyalgia thing or not. I have learned by being in a support group that people with Fibromyalgia have a lot of strange similarities, like being clumsy, having depression, being anxious, etc. Things that you wouldn't necessarily relate to a physical illness.
Speaking of the support group, that's the reason I'm thinking of closing this blog. I thought I was writing it for others, but it seems like I was writing it for me. Once I started contributing to the support group, I stopped contributing to this blog, which tells me that my need to write and communicate and help others and be helped is being fulfilled by the support group.
It's not so easy to admit that.
I love to write, and I will definitely always find avenues to continue to write. But it feels like when I write this blog I'm complaining more than I'm helping. My goal was to keep this blog positive. The reality is that there are not that many positive things about Fibromyalgia to write about. There are some great people with Fibromyalgia who are continuing to live their lives, despite this thing, and that's positive. There is more awareness of Fibromyalgia due to the outcry of so many who are tired of being ignored, under diagnosed, despised, and misdiagnosed and that's positive. But we need to get beyond being aware of it, to taking some type of action, don't we?
The fact is having Fibromyalgia is not very exciting. My days are boring. I don't go too many places and I don't have many great adventures. There's one thing I hate is a boring writer, and I don't want to end up being one who sits around and complains to you about my boring life.
I think it is human nature to want to contribute something to this world while we are alive. When you have a disability, more times than not, your contribution is accepting someone else's help. I read and hear about great people with disabilities who climb mountains, swim oceans, manage companies. I think to myself, "Where do they get the energy?" I don't have that kind of energy. It's all I can do to survive the day sometimes.
I found a quote that I put at the bottom of my to do list every day:
My friend said to me today, "I wish I could stay at home so I could have more time." I think she sort of resented the fact that I stay home. Does she know what I do all day? I don't drive, I lay down or sit down more than anything. My cats are my closest friends because they live like me-resting under a blanket all day. I don't have hardly any time to do anything because when I finally feel good enough to do anything it's midnight and I'm supposed to try to sleep so I won't be so tired tomorrow. I can't eat what I want or wear what I want or go where I want, and after a while I don't want anymore.
I feel like I'm fighting an invisible enemy, and writing to an invisible friend. A blog is a lonely stone's throw and maybe I will turn around and go home before I have a chance to see the ripples.
Well, guess I will do what I've learned-take it one day at a time, trust God, and see what happens.
"Accept, then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it. This will miraculously transform your whole life."--Eckhart Tolle
Is it my "all or nothing" syndrome popping up again? I've been told by every therapist I've seen that I have it. Not sure what the technical diagnosis is, but it means either I do something all the way, or I don't do it at all. Anybody else like that? I call it being honest.
I don't know if this is a Fibromyalgia thing or not. I have learned by being in a support group that people with Fibromyalgia have a lot of strange similarities, like being clumsy, having depression, being anxious, etc. Things that you wouldn't necessarily relate to a physical illness.
Speaking of the support group, that's the reason I'm thinking of closing this blog. I thought I was writing it for others, but it seems like I was writing it for me. Once I started contributing to the support group, I stopped contributing to this blog, which tells me that my need to write and communicate and help others and be helped is being fulfilled by the support group.
It's not so easy to admit that.
I love to write, and I will definitely always find avenues to continue to write. But it feels like when I write this blog I'm complaining more than I'm helping. My goal was to keep this blog positive. The reality is that there are not that many positive things about Fibromyalgia to write about. There are some great people with Fibromyalgia who are continuing to live their lives, despite this thing, and that's positive. There is more awareness of Fibromyalgia due to the outcry of so many who are tired of being ignored, under diagnosed, despised, and misdiagnosed and that's positive. But we need to get beyond being aware of it, to taking some type of action, don't we?
The fact is having Fibromyalgia is not very exciting. My days are boring. I don't go too many places and I don't have many great adventures. There's one thing I hate is a boring writer, and I don't want to end up being one who sits around and complains to you about my boring life.
I think it is human nature to want to contribute something to this world while we are alive. When you have a disability, more times than not, your contribution is accepting someone else's help. I read and hear about great people with disabilities who climb mountains, swim oceans, manage companies. I think to myself, "Where do they get the energy?" I don't have that kind of energy. It's all I can do to survive the day sometimes.
I found a quote that I put at the bottom of my to do list every day:
"Accept, then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it. This will miraculously transform your whole life."
Fighting Fibromyalgia doesn't work, so I'm trying to accept it. If I stop writing about it, can I accept it better? I can't imagine a healthy person choosing Fibromyalgia. If I act as though I've chosen Fibromyalgia, it will miraculously transform my whole life. Really? It's almost too much to think about. Is there anything worth choosing Fibromylagia for?
The only thing I can think of is the fact that I have learned total dependence on God for every moment of my life. Would I have learned this another way? Would I have learned patience another way? I've learned that my soul is more important than my body and I know that in my humility my name is written in God's book. So death is taken care of, but what about life?
My friend said to me today, "I wish I could stay at home so I could have more time." I think she sort of resented the fact that I stay home. Does she know what I do all day? I don't drive, I lay down or sit down more than anything. My cats are my closest friends because they live like me-resting under a blanket all day. I don't have hardly any time to do anything because when I finally feel good enough to do anything it's midnight and I'm supposed to try to sleep so I won't be so tired tomorrow. I can't eat what I want or wear what I want or go where I want, and after a while I don't want anymore.
See what I mean about trying to find something positive?
I feel like I'm fighting an invisible enemy, and writing to an invisible friend. A blog is a lonely stone's throw and maybe I will turn around and go home before I have a chance to see the ripples.
Well, guess I will do what I've learned-take it one day at a time, trust God, and see what happens.
Have a good night my invisible friend! Throw me a stone once in a while too!
"Accept, then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it. This will miraculously transform your whole life."--Eckhart Tolle
Thursday, May 17, 2012
Losing Control
By Theresa Blume
Women love to have control. Men love to be in control. Whoever has control of the remote has control of the house!
But seriously, I have worked hard to gain control over my life for a long time. I was raised to respect authority, and took it to the extreme, in my young adult days, which turned out badly in my early adult years. I met with abuse and people took advantage of me leaving me with zero self-esteem. Then I met my husband, Danny who helped me understand that I could do anything I wanted to, and I learned that I was in charge of my life. I became a strong woman, doing the shopping, paying the bills, making family decisions, cooking home-made meals, keeping a clean house, even having guests over.
My faith told me to surrender my will to God. I didn't like the word "submissive" (especially to men!), but I gave God a little bit of my life. I did what I thought I was supposed to do and tried my best to be faithful. But I still ran my house with strength and confidence.
As Fibromyalgia became more and more severe, I had to give up a few things-like vacuuming, and then dishes, and sometimes even cooking on bad days. Then I had to ask my husband to do some errands on his way home from work, and my daughter started doing the laundry. I didn't want to do driving with taking medicine, so I started getting them to drive me. I hated to admit that I needed help with Avon, but my customers are the best and pick up their orders, and sometimes I get helpers with big projects.
After getting our taxes done this year, I told my husband he is doing the bookwork because my brain doesn't focus on long-term things like it used to. I give him papers that need filling out and even some phone calls about our bills or whatever.
Losing control has not been an overnight process, but a slow subtle one. At first it looks like help, and then it becomes a need. I like to think of it as a choice to GIVE up control, but the reality is I don't have a choice. My choice would be that strong independent woman in my early days. Instead of rebelling to being a submissive wife, I now treasure my husband for staying with me through sickness and health.
I finally get the message about surrendering to God. Because He is the One who gets me up in the morning, and gives me people who help me just at the right times. God is the One whose in control of my life now. At night I can't wait to do my Bible study because it gives me such comfort and hope and reasurrance.
I have a lot more time to talk to Him now that I am not as mobile as I used to be. I have to rest a lot, so I lie down and talk to Him. I don't sleep too good at night, so I talk to Him in the odd hours of the night. He's always there, 24-7, never too busy, never on hold.
Losing Control has been a hard lesson of life, but it's also been a gift. As my body gets weaker, my soul gets stronger, feeling the pull of my God, knowing someday I won't be confined in pain. It doesn't matter if I have to be driven to an appointment or can't clean my house. God loves me all the more and makes sure that whatever does matter gets done. He doesn't see my pride that has fallen on the floor next to me. He sees me whole and perfect, as His child. I think by losing control I've gained something immeasureable and eternal. And this time I didn't have to lose my self-esteem!
"The more we depend on God,
the more dependable we find He is."
—Cliff Richard
Women love to have control. Men love to be in control. Whoever has control of the remote has control of the house!
But seriously, I have worked hard to gain control over my life for a long time. I was raised to respect authority, and took it to the extreme, in my young adult days, which turned out badly in my early adult years. I met with abuse and people took advantage of me leaving me with zero self-esteem. Then I met my husband, Danny who helped me understand that I could do anything I wanted to, and I learned that I was in charge of my life. I became a strong woman, doing the shopping, paying the bills, making family decisions, cooking home-made meals, keeping a clean house, even having guests over.
My faith told me to surrender my will to God. I didn't like the word "submissive" (especially to men!), but I gave God a little bit of my life. I did what I thought I was supposed to do and tried my best to be faithful. But I still ran my house with strength and confidence.
As Fibromyalgia became more and more severe, I had to give up a few things-like vacuuming, and then dishes, and sometimes even cooking on bad days. Then I had to ask my husband to do some errands on his way home from work, and my daughter started doing the laundry. I didn't want to do driving with taking medicine, so I started getting them to drive me. I hated to admit that I needed help with Avon, but my customers are the best and pick up their orders, and sometimes I get helpers with big projects.
After getting our taxes done this year, I told my husband he is doing the bookwork because my brain doesn't focus on long-term things like it used to. I give him papers that need filling out and even some phone calls about our bills or whatever.
Losing control has not been an overnight process, but a slow subtle one. At first it looks like help, and then it becomes a need. I like to think of it as a choice to GIVE up control, but the reality is I don't have a choice. My choice would be that strong independent woman in my early days. Instead of rebelling to being a submissive wife, I now treasure my husband for staying with me through sickness and health.
I finally get the message about surrendering to God. Because He is the One who gets me up in the morning, and gives me people who help me just at the right times. God is the One whose in control of my life now. At night I can't wait to do my Bible study because it gives me such comfort and hope and reasurrance.
I have a lot more time to talk to Him now that I am not as mobile as I used to be. I have to rest a lot, so I lie down and talk to Him. I don't sleep too good at night, so I talk to Him in the odd hours of the night. He's always there, 24-7, never too busy, never on hold.
Losing Control has been a hard lesson of life, but it's also been a gift. As my body gets weaker, my soul gets stronger, feeling the pull of my God, knowing someday I won't be confined in pain. It doesn't matter if I have to be driven to an appointment or can't clean my house. God loves me all the more and makes sure that whatever does matter gets done. He doesn't see my pride that has fallen on the floor next to me. He sees me whole and perfect, as His child. I think by losing control I've gained something immeasureable and eternal. And this time I didn't have to lose my self-esteem!
"The more we depend on God,
the more dependable we find He is."
—Cliff Richard
Tuesday, May 8, 2012
Fibromyalgia Awareness Day
To help promote Fibromyalgia Awareness Day, I wrote this piece and shared it with local newspapers. I thought maybe it would be a good thing to share with you since many of you do not live in central Wisconsin.
Fibromyalgia Awareness Day is May 12th.
Are you aware that an estimated 10 million people in the U.S are being affected by something that you can't see? It also affects an estimated 3-6% of the world's population!
Are you aware that prominent Fibromyalgia researchers and specialists estimate the costs in the U.S. to be between $12-14 BILLION each year accounts for a loss of 1-2% of the nation's overall productivity?
Are you aware that annual medical care costs to the patient are $3700.00, EXCLUDING the cost of managing overlapping conditions, such as these symptoms:
1) Severity of fatigue, particularly in the subject of non-restorative sleep.
3) Cognitive malfunctions.
4) Irritable Bowel Syndrome, Restless Leg Syndrome or Raynaud's Disease
5) Migraines.
6) Chronic anxiety or tension.
7) Depression.
8) Environmental sensitivities, such as chemical, light, noise or weather.
9) Pain modulation by physical activities.
10) Pain modulation by anxiety or stress.
Are you aware that Fibromyalgia is a complex chronic pain disorder that affects people physically, mentally, and socially, and for those with severe symptoms, Fibromyalgia can be extremely debilitating and interferes with basic daily activities?
Are you aware that 75-90% of the people who have this are women, but it also occurs in men and children of all ethnic groups?
Are you aware that this disorder is often seen in families, among siblings, mothers, and their children?
Are you aware that Fibromyalgia is the second most common musculoskeletal ailment after osteoarthritis, but Fibro patients submit more medical claims for psychiatric diagnosis's and utilize the emergency room more than rheumatoid arthritis patients!
Are you aware that the theme that the Wisconsin Fibromyalgia Network is presenting for 2012 is
"Walking in Another's Shoes"
From Sarah Carter-Founder of WFN, "The belief that walking in another's shoes stems from the hope of Fibromyalgia patients that one day their loved ones and members of society will understand the depth of it's severity and effect, without actually having to experience the affliction itself.
This year, the WFN encourages all of Wisconsin's residents to take a moment to speak to a Fibro patient who may be a co-worker, a friend, a daughter, a grandfather, or a neighbor, and find out not only the difficulties the person faces-but also the joys and lessons learned that may have enhanced that person's life. You never know; you may learn something new. You may have enriched your own life...just by walking in another's shoes."
FINISH LINE
Fibromyalgia does not stop my progress.
It changes the way I progress.
My progress may not be where your progress takes you.
And that's OK.
We each have a unique path and a set pace.
In a race, no one arrives at the exact same time,
but all who are destined, will finish.
I am not racing against any person,
only the moments and breaths and days of my own earthly life.
I pray that I too am destined to reach the finish line.
(Poem written by Theresa Blume)
Those looking for more support may go to these websites for more information:
Fibromyalgia and Chronic Pain http://www.fmcpaware.org/
Wisconsin Fibromyalgia Network http://wifibromyalgianetwork.webs.com/
Fibromyalgia Awareness Day is May 12th.
Are you aware that an estimated 10 million people in the U.S are being affected by something that you can't see? It also affects an estimated 3-6% of the world's population!
Are you aware that prominent Fibromyalgia researchers and specialists estimate the costs in the U.S. to be between $12-14 BILLION each year accounts for a loss of 1-2% of the nation's overall productivity?
Are you aware that annual medical care costs to the patient are $3700.00, EXCLUDING the cost of managing overlapping conditions, such as these symptoms:
1) Severity of fatigue, particularly in the subject of non-restorative sleep.
3) Cognitive malfunctions.
4) Irritable Bowel Syndrome, Restless Leg Syndrome or Raynaud's Disease
5) Migraines.
6) Chronic anxiety or tension.
7) Depression.
8) Environmental sensitivities, such as chemical, light, noise or weather.
9) Pain modulation by physical activities.
10) Pain modulation by anxiety or stress.
Are you aware that Fibromyalgia is a complex chronic pain disorder that affects people physically, mentally, and socially, and for those with severe symptoms, Fibromyalgia can be extremely debilitating and interferes with basic daily activities?
Are you aware that 75-90% of the people who have this are women, but it also occurs in men and children of all ethnic groups?
Are you aware that this disorder is often seen in families, among siblings, mothers, and their children?
Are you aware that Fibromyalgia is the second most common musculoskeletal ailment after osteoarthritis, but Fibro patients submit more medical claims for psychiatric diagnosis's and utilize the emergency room more than rheumatoid arthritis patients!
Are you aware that the theme that the Wisconsin Fibromyalgia Network is presenting for 2012 is
"Walking in Another's Shoes"
From Sarah Carter-Founder of WFN, "The belief that walking in another's shoes stems from the hope of Fibromyalgia patients that one day their loved ones and members of society will understand the depth of it's severity and effect, without actually having to experience the affliction itself.
This year, the WFN encourages all of Wisconsin's residents to take a moment to speak to a Fibro patient who may be a co-worker, a friend, a daughter, a grandfather, or a neighbor, and find out not only the difficulties the person faces-but also the joys and lessons learned that may have enhanced that person's life. You never know; you may learn something new. You may have enriched your own life...just by walking in another's shoes."
FINISH LINE
Fibromyalgia does not stop my progress.
It changes the way I progress.
My progress may not be where your progress takes you.
And that's OK.
We each have a unique path and a set pace.
In a race, no one arrives at the exact same time,
but all who are destined, will finish.
I am not racing against any person,
only the moments and breaths and days of my own earthly life.
I pray that I too am destined to reach the finish line.
(Poem written by Theresa Blume)
Those looking for more support may go to these websites for more information:
Fibromyalgia and Chronic Pain http://www.fmcpaware.org/
Wisconsin Fibromyalgia Network http://wifibromyalgianetwork.webs.com/
Wednesday, April 11, 2012
SUPPORT
By: Theresa Blume
There is definitely something to be said about feeling supported when you have a disability of any kind. You feel alone and like no one understands, and you feel guilty that you can't do more. I think it is especially hard when you live with others, particularly when you have a significant other.
The statistics are not good for married couples when one has a disability, and living with Fibromyalgia every day has shown me an inside view. Thankfully, I have the best of husbands who is committed to our marriage, even after 25 years. But even he is not perfect, and I can see his shoulders slump when I have to cancel something we intended to do together. I know he gets impatient when I sleep late, and wake up still too tired to do anything fun on his days off. I see how he tries not to complain about doing the dishes and making supper once again, after a long day of work.
I could go on and on, but I want to stress something positive that can come from this, and that is support groups. Friends are wonderful, especially ones that really get it, but in a support group, you feel like you are actually in a family of peers on your own level. We all have our bad days, our good days, our favorite doctors, and experiences of what works and what doesn't. Of course we don't wish anyone to have a disability, but a support group makes it so much easier to live with.
I tried to get a group together in our little town a couple years ago, and immediately found out that people with Fibromyalgia make poor members when it comes to meeting in person. With our unstable challenges, it was impossible to schedule a time when everybody will feel good enough to go to a meeting! But online, they are the best! Most of us can't do much physically, so we've turned to what we can do, and that is communicate online.
Thanks to a friend I was hooked up to a new group that started up in my state. We already have members from other states who don't have a group of their own, and when you are online, it doesn't matter where you are from. I remember when I had cancer, one of the biggest things that helped me get through it was the interaction with those who had the same kind of cancer on the site, "Daily Strength". There is a group for EVERYTHING on that site, whether you are depressed, a single parent, sick, or whatever, check out Daily Strength.
I recently was able to get an Android Tablet that has helped me tremendously for connecting because I can sit anywhere and take my time and read and respond. Being at the computer is hard for me, and I didn't realize what I was missing until I got the tablet. There's always a perfect timing to things, as the saying goes, "When the student is ready, the teacher arrives", or something like that. I feel like this tablet is my teacher and I was finally ready for a real support group online.
It's very hard to live every day of your life with Fibromyalgia, but I thank God for old friends, new friends, and tablets that I can carry wherever I go!
“The best way to cheer yourself up is to try to cheer somebody else up.” ― Mark Twain
There is definitely something to be said about feeling supported when you have a disability of any kind. You feel alone and like no one understands, and you feel guilty that you can't do more. I think it is especially hard when you live with others, particularly when you have a significant other.
The statistics are not good for married couples when one has a disability, and living with Fibromyalgia every day has shown me an inside view. Thankfully, I have the best of husbands who is committed to our marriage, even after 25 years. But even he is not perfect, and I can see his shoulders slump when I have to cancel something we intended to do together. I know he gets impatient when I sleep late, and wake up still too tired to do anything fun on his days off. I see how he tries not to complain about doing the dishes and making supper once again, after a long day of work.
I could go on and on, but I want to stress something positive that can come from this, and that is support groups. Friends are wonderful, especially ones that really get it, but in a support group, you feel like you are actually in a family of peers on your own level. We all have our bad days, our good days, our favorite doctors, and experiences of what works and what doesn't. Of course we don't wish anyone to have a disability, but a support group makes it so much easier to live with.
I tried to get a group together in our little town a couple years ago, and immediately found out that people with Fibromyalgia make poor members when it comes to meeting in person. With our unstable challenges, it was impossible to schedule a time when everybody will feel good enough to go to a meeting! But online, they are the best! Most of us can't do much physically, so we've turned to what we can do, and that is communicate online.
Thanks to a friend I was hooked up to a new group that started up in my state. We already have members from other states who don't have a group of their own, and when you are online, it doesn't matter where you are from. I remember when I had cancer, one of the biggest things that helped me get through it was the interaction with those who had the same kind of cancer on the site, "Daily Strength". There is a group for EVERYTHING on that site, whether you are depressed, a single parent, sick, or whatever, check out Daily Strength.
I recently was able to get an Android Tablet that has helped me tremendously for connecting because I can sit anywhere and take my time and read and respond. Being at the computer is hard for me, and I didn't realize what I was missing until I got the tablet. There's always a perfect timing to things, as the saying goes, "When the student is ready, the teacher arrives", or something like that. I feel like this tablet is my teacher and I was finally ready for a real support group online.
It's very hard to live every day of your life with Fibromyalgia, but I thank God for old friends, new friends, and tablets that I can carry wherever I go!
“The best way to cheer yourself up is to try to cheer somebody else up.” ― Mark Twain
Saturday, January 14, 2012
New Year's Thoughts
I started this blog last year with the idea to show what it is like to live with Fibromyalgia every day, but I also wanted to keep a positive attitude in it. I realize that I have slipped off the track of positiveness, and entered into the dark realm of complaining. So I am going to start again.
It's very easy to slip and become a chronic complainer because you live in constant pain and discomfort. I start out simply trying to explain why I am acting a certain way, and end up complaining. If someone asks me how I am, I feel I should be truthful and say how I am.
But that is not the way I want to be. Truthful, yes, but not focusing on the bad stuff. It is very hard when pain speaks the loudest, but I have to remind myself that everyone lives with some challenge. It might not be physical, but it might be emotional, or relationship related, or financial concerns. It's not what we have, but how we handle what we have.
I have made a New Year's Resolution this year by the way. I have resolved to find specific time for myself. I have not actually done it yet, but I want to schedule some time on a regular basis, whether it be daily, weekly, monthly, but it will be a routine. I'm not sure what I will do during this time, but I know that after this last holiday season, I was desperately seeking time and space for me. So that's what I'm working on. It doesn't have to start January 1rst, but at least it is in the process.
I'm not sure how to handle Fibromyalgia without complaining, but I'd like to learn to be tougher. I don't have to be perfect, but I'd like to be better than I am. If you have any good ideas send them to me because it's always here. I don't know that it can or should be ignored, but is there a way to not burden others with it, and at the same time take care of myself?
This is the stuff that I'm thinking tonight that I wanted to share with you. I see a doctor appointment in my near future with my latest stomach situation, and if it send me on a new course I will let you know. I want to educate you, help you to know that you are not alone, but at the same time, not complain. Is it possible? We will see.
“Constant effort and frequent mistakes are the stepping stones of genius.” ― Elbert Hubbard
It's very easy to slip and become a chronic complainer because you live in constant pain and discomfort. I start out simply trying to explain why I am acting a certain way, and end up complaining. If someone asks me how I am, I feel I should be truthful and say how I am.
But that is not the way I want to be. Truthful, yes, but not focusing on the bad stuff. It is very hard when pain speaks the loudest, but I have to remind myself that everyone lives with some challenge. It might not be physical, but it might be emotional, or relationship related, or financial concerns. It's not what we have, but how we handle what we have.
I have made a New Year's Resolution this year by the way. I have resolved to find specific time for myself. I have not actually done it yet, but I want to schedule some time on a regular basis, whether it be daily, weekly, monthly, but it will be a routine. I'm not sure what I will do during this time, but I know that after this last holiday season, I was desperately seeking time and space for me. So that's what I'm working on. It doesn't have to start January 1rst, but at least it is in the process.
I'm not sure how to handle Fibromyalgia without complaining, but I'd like to learn to be tougher. I don't have to be perfect, but I'd like to be better than I am. If you have any good ideas send them to me because it's always here. I don't know that it can or should be ignored, but is there a way to not burden others with it, and at the same time take care of myself?
This is the stuff that I'm thinking tonight that I wanted to share with you. I see a doctor appointment in my near future with my latest stomach situation, and if it send me on a new course I will let you know. I want to educate you, help you to know that you are not alone, but at the same time, not complain. Is it possible? We will see.
“Constant effort and frequent mistakes are the stepping stones of genius.” ― Elbert Hubbard
Monday, January 2, 2012
Chronically Tired (Exhausted)
By Theresa Blume
Oh, how I wish I were a bear! I could hibernate all winter and no one would think it was strange. First of course I would eat double my weight in food in the fall, and then find a nice cozy cave and warm blankets and just drift off into wonderful sleep.
Back to reality. I'm not a bear! I only have Chronic Fatigue with Fibromyalgia so I just WANT to sleep the whole winter away. The one big problem is I don't sleep at night! So I've come up with a good solution. Sleep when I feel like it.
So far it looks like this:
The day begins (not really) at 5 in the morning when I stiffly get off the bed, grab a pain pill and allergy pill, get the heating pad and put it on my back. Fall asleep till 7 or 8.
Get off the couch, go back to bed. Sleep until 11.
Force FORCE myself to get up and get a shower. Get dressed. Feed the cats. Fall asleep on the couch sitting up till 1.
The afternoon is BEARABLE until about 4:00. Absolutely can't stay awake so I crawl back into bed for a couple hours.
Eat something for supper. Stay awake until 9:00. Fall asleep unable to keep my eyes open until-what time is it now? 11:00pm. Awake, don't feel too bad.
Now the question, should I take this wonderful feeling that I have for the first time today and take a sleeping pill or muscle relaxer to force myself to go to bed at what society calls a decent hour? Or should I try to accomplish everything I couldn't do all day so I can catch up. If I force myself to sleep, I will still be the same way tomorrow. If I don't, I will still be the same way tomorrow.
I would like to know what you would do!
Oh, how I wish I were a bear! I could hibernate all winter and no one would think it was strange. First of course I would eat double my weight in food in the fall, and then find a nice cozy cave and warm blankets and just drift off into wonderful sleep.
Back to reality. I'm not a bear! I only have Chronic Fatigue with Fibromyalgia so I just WANT to sleep the whole winter away. The one big problem is I don't sleep at night! So I've come up with a good solution. Sleep when I feel like it.
So far it looks like this:
The day begins (not really) at 5 in the morning when I stiffly get off the bed, grab a pain pill and allergy pill, get the heating pad and put it on my back. Fall asleep till 7 or 8.
Get off the couch, go back to bed. Sleep until 11.
Force FORCE myself to get up and get a shower. Get dressed. Feed the cats. Fall asleep on the couch sitting up till 1.
The afternoon is BEARABLE until about 4:00. Absolutely can't stay awake so I crawl back into bed for a couple hours.
Eat something for supper. Stay awake until 9:00. Fall asleep unable to keep my eyes open until-what time is it now? 11:00pm. Awake, don't feel too bad.
Now the question, should I take this wonderful feeling that I have for the first time today and take a sleeping pill or muscle relaxer to force myself to go to bed at what society calls a decent hour? Or should I try to accomplish everything I couldn't do all day so I can catch up. If I force myself to sleep, I will still be the same way tomorrow. If I don't, I will still be the same way tomorrow.
I would like to know what you would do!
"People, even more than things, have to be restored, renewed, revived, reclaimed, and redeemed; never throw out anyone." — Audrey Hepburn, actress and philanthropist
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