I realized the statement in my last post may have raised some alarm with people who aren't around me all of the time. Yes, I have been sober for 5wks. Yes, society has conditioned us that when the word sober is paired with a length of time, it automatically means "ALCOHOLIC." However, sober simply means "not drunk" or "not under the influence of mind altering substances such as alcohol, drugs, etc." So, leaving the stigma behind, yes I have been sober for 5wks (and 1 day) now. I have had plenty of opportunities to drink, but I haven't. I've even been offered alcohol by friends who know I have chosen to stop drinking, but I said no. I've chosen to keep track of the time for me. For the moments I try to tell myself, "It isn't that big of a deal. You can have just one drink," I can look and see that I've already put 5wks of work into it. Yes, that is a big deal, and no, I don't want to ruin that.
Do I consider myself an alcoholic? No. I don't. And here is why, (according to the medical definition of alcoholism):
-My body has never been chemically dependent upon alcohol. (Meaning, my body did not go through alcohol withdrawal when I stopped drinking.)
-I never showed up to work drunk, nor did I even drink every night for that matter.
-I did not experience social or health problems directly influenced from alcohol intake. (I'm sure it didn't help my health, but my health issues were pre-existing to any alcohol consumption on my part.)
Did I have unhealthy drinking patterns? Yes. I did. And I am admitting that to you all now for accountability. Alcohol was something I used to go to when I was stressed, or depressed. Many people go to food, cigarettes, promiscuity...I chose alcohol. I could drink to make myself sleepy, I could drink to make video games funnier, or I could drink to slow my brain down to keep from being extremely anxious about uncomfortable/stressful situations. Basically I used it to not have to experience life as it really was.
Yes. I realize alcohol mostly, if not completely nullifies the purpose of my anti-depressant. But it worked Right. Then. I'm sure anyone who smokes or used to smoke cigarettes can empathize with me.
Was I wrong for depending on alochol to handle my emotions rather than dealing with them directly myself? Yes. Not only is it unhealthy for my body, it is unhealthy for me psychologically. It not only fed my addictive personality, it allowed me to avoid dealing with uncomfortable situations. It allowed me to run away.
This new portion of my life is all about facing my demons/ghosts/fears...whatever you want to call them. I realize if I never face these issues, however small or big they already are, they will only continue to get bigger and eventually explode, causing yet another traumatic, dramatic experience in my life.
Ain't nobody got time for that.
I'm doing everything I can Right. Now. to break my old, unhealthy patterns that kept me in a continuous spiral over the past several years. Sometimes I will mess up, and some of this process is going to be rough as I figure out what works for me. But the most important part is that I've realized the "error of my ways" and I'm taking the steps to correct the behavior patterns. That, my friends, is what matters most to me. I ask for your support in this, but regardless of your support, I'm doing this for me so that I may be a better friend, daughter, wife, and some day mother.
Welcome to my crazy (and sometimes fun) journey in learning how to manage my Fibromyalgia while being a new wife, working full-time, keeping up with a house, 3 dogs, and 2 cats, and trying to stay sane all the while. The sane part is optional most of the time.
Showing posts with label Acceptance. Show all posts
Showing posts with label Acceptance. Show all posts
Tuesday, November 20, 2012
Monday, November 19, 2012
The Process of Acceptance
Yesterday I made 5 weeks sober.
"The only solution is to let go of who you once were and try to embrace the person you are today."
This is one of the many statements I wrote down when I first started brainstorming for my blog. It was followed by the questions,
"Who did I used to be?" and "Who am I now?"
To be honest, I'm not even sure I know the answers to those questions. But I'm going to try my best to answer them now...so bare with me here. It might be a little rough.
Who I used to be: Emotionally reactive, whether it be happy, sad, frustrated, or down right angry. My emotions always led the way. There was no hiding it. Some people referred to me as "high strung." I can't say that I would disagree. I overloaded my plate ALL of the time. I wanted to do everything for everyone. I was completely and totally insecure about everything. When I say everything, I mean down to every. word. that. came. out. of. my. mouth. Everyone who was nice to me, I assumed they were just "humoring" me. Even though I was successful with my job, I required confirmation from my boss or other peers to feel validated that I really was doing well. In fact, I required validation of my feelings about most anything.
Constantly I felt guilty because there was always something wrong with me. When someone would ask what was wrong or if I was in a bad mood, I'd normally lie and just say I was tired. I felt like a hypochondriac. I didn't understand why, at the mere age of 24, I felt so bad all of the time. I was destructive. Emotionally and physically. I'd literally hate on myself all of the time. I hated that I gained weight. I gained enough to where I decided I'd never lose it. It would be impossible. I hated that I was socially awkward, when all I wanted was to fit in (this stems back all the way to grade school.) I hated that I couldn't just "get myself together" and be "fine." Did I mention that I hated there was always something wrong with me?
Physically I'd destroy myself by staying up too late, not sleeping enough, eating food that only further displeased my already messed up digestive system, and of course alcohol. Lots and lots of alcohol. If you're familiar at all with the show How I Met Your Mother, you'll understand when I say every time I drank, my mindset was, "Challenge Accepted." How much could I drink and manage to still stumble up the stairs to my bedroom. Or not. A few times Iallowed relied on Jeremy to help me. The next morning I wouldn't remember things that happened the night before (which is bad since I don't remember lots of things when I'm sober either.) I hated myself for drinking, so I'd drink more to not feel so bad about hating myself. Yes I know, that doesn't make sense. But the mindset of someone with an alcohol issue usually doesn't make sense. I never felt like doing my make-up or hair in the morning, so I'd say I didn't care. But then I'd be self-conscious every day at work and feel ugly. Even though I had some really interesting and nice accomplishments, none of it really seemed to be that big of a deal to me. To sum it up, I hated myself and assumed no one really liked me either.
Who I am now: I'm still emotionally reactive, but I'm getting better at controlling it in certain situations. I've also accepted that my emotions make me who I am. I also have made it a point to remove myself from situations that I know will only increase my stress. (Stress is the easiest way to start a flare, for me at least.) I try my best to only associate myself with people who impact my life positively. I try to limit the things I commit myself to. I realize I can't fix everything for everyone. I try my best not to dwell on everything, especially the things I have no control over. My awesome friend Kalli has helped me a ton by helping me identify the things I can control, and quantify if the result will be "the end of the world," or what the worst case scenario really is. (Usually it isn't nearly as bad as I make it out to be.)
I lost 30lbs before my wedding. By doing this, I realize it isn't impossible. I have put back on a bit of the weight I lost, but I don't hate myself. I'm not that little 130lb thing I used to be (and probably never will be again), but I have learned to dress myself appropriately where I can still be comfortable in my own body. And most of all, I have realized and accepted that my husband didn't fall in love with 130lb little ol' me. He didn't even know me then. He fell in love with the heavier, curvier me. And I feel secure in that. I've worked through a lot of the insecurities regarding my friends and the feelings of being "just humored." I learned to accept that its quite possible there are people on this planet that sincerely enjoy being around me. (Gasp!)
When I'm asked how I feel, I'm honest, but I've learned how to phrase things in different ways to where I don't constantly sound like the Debbie-Downer I used to hate. Instead, when I'm asked how I'm doing I choose to focus on the good things going on in my life, thus giving me a positive answer. It isn't a lie to say, "I'm doing well." I have a lot of really great things going on, and I'm learning to cherish them as they are. I've also stepped out of the bitterness and started asking how other people are doing. I know that may sound extremely selfish, but used to I would never ask, "How was your weekend?" or other variations. Frankly, I didn't want to know because I knew it would be better than mine, because mine inevitably sucked. I'm getting better at what I like to refer as, "The Social Contract." I also realized that I do not have to drink alcohol to comply with, "The Social Contract." I do not have to drink alcohol at all for anything. So I don't. It's hard, especially at get-together's with friends and everyone is having wine or a martini. But my husband is encouraging, and so far I've done ok.
Most of all, I've begun to accept that I am enough. I do have times where I fall down the rabbit-hole of doom and despair, but for the most part I feel good about myself. I'm involved in an amazing support group, I get along with people at work, I'm confident my boss likes me, and I'm finally back at church. In spite of my pain and in the moments of sadness when I get frustrated that I even have to deal with this illness, I also know that God would not have given it to me unless I could handle it. This was a wake-up call for me. The moment I realized I had no control over my body, and never had, I was humbled to the grace of God and reminded that He has had control all along, regardless of my attempts to ignore Him. I was also reminded that I don't have to go this alone. My hope is only that I can continue on the right path and to lean on God when I need strength.
So it seems that letting go of the old me would be easy since the old me didn't seem to pleasant...but it was hard. And I still hold on to bits and pieces of the old me. I'm still cynical about most things, but I'm much more open to positivity than I was before. I have chosen to be Happy.
"The only solution is to let go of who you once were and try to embrace the person you are today."
This is one of the many statements I wrote down when I first started brainstorming for my blog. It was followed by the questions,
"Who did I used to be?" and "Who am I now?"
To be honest, I'm not even sure I know the answers to those questions. But I'm going to try my best to answer them now...so bare with me here. It might be a little rough.
Who I used to be: Emotionally reactive, whether it be happy, sad, frustrated, or down right angry. My emotions always led the way. There was no hiding it. Some people referred to me as "high strung." I can't say that I would disagree. I overloaded my plate ALL of the time. I wanted to do everything for everyone. I was completely and totally insecure about everything. When I say everything, I mean down to every. word. that. came. out. of. my. mouth. Everyone who was nice to me, I assumed they were just "humoring" me. Even though I was successful with my job, I required confirmation from my boss or other peers to feel validated that I really was doing well. In fact, I required validation of my feelings about most anything.
Constantly I felt guilty because there was always something wrong with me. When someone would ask what was wrong or if I was in a bad mood, I'd normally lie and just say I was tired. I felt like a hypochondriac. I didn't understand why, at the mere age of 24, I felt so bad all of the time. I was destructive. Emotionally and physically. I'd literally hate on myself all of the time. I hated that I gained weight. I gained enough to where I decided I'd never lose it. It would be impossible. I hated that I was socially awkward, when all I wanted was to fit in (this stems back all the way to grade school.) I hated that I couldn't just "get myself together" and be "fine." Did I mention that I hated there was always something wrong with me?
Physically I'd destroy myself by staying up too late, not sleeping enough, eating food that only further displeased my already messed up digestive system, and of course alcohol. Lots and lots of alcohol. If you're familiar at all with the show How I Met Your Mother, you'll understand when I say every time I drank, my mindset was, "Challenge Accepted." How much could I drink and manage to still stumble up the stairs to my bedroom. Or not. A few times I
Who I am now: I'm still emotionally reactive, but I'm getting better at controlling it in certain situations. I've also accepted that my emotions make me who I am. I also have made it a point to remove myself from situations that I know will only increase my stress. (Stress is the easiest way to start a flare, for me at least.) I try my best to only associate myself with people who impact my life positively. I try to limit the things I commit myself to. I realize I can't fix everything for everyone. I try my best not to dwell on everything, especially the things I have no control over. My awesome friend Kalli has helped me a ton by helping me identify the things I can control, and quantify if the result will be "the end of the world," or what the worst case scenario really is. (Usually it isn't nearly as bad as I make it out to be.)
I lost 30lbs before my wedding. By doing this, I realize it isn't impossible. I have put back on a bit of the weight I lost, but I don't hate myself. I'm not that little 130lb thing I used to be (and probably never will be again), but I have learned to dress myself appropriately where I can still be comfortable in my own body. And most of all, I have realized and accepted that my husband didn't fall in love with 130lb little ol' me. He didn't even know me then. He fell in love with the heavier, curvier me. And I feel secure in that. I've worked through a lot of the insecurities regarding my friends and the feelings of being "just humored." I learned to accept that its quite possible there are people on this planet that sincerely enjoy being around me. (Gasp!)
When I'm asked how I feel, I'm honest, but I've learned how to phrase things in different ways to where I don't constantly sound like the Debbie-Downer I used to hate. Instead, when I'm asked how I'm doing I choose to focus on the good things going on in my life, thus giving me a positive answer. It isn't a lie to say, "I'm doing well." I have a lot of really great things going on, and I'm learning to cherish them as they are. I've also stepped out of the bitterness and started asking how other people are doing. I know that may sound extremely selfish, but used to I would never ask, "How was your weekend?" or other variations. Frankly, I didn't want to know because I knew it would be better than mine, because mine inevitably sucked. I'm getting better at what I like to refer as, "The Social Contract." I also realized that I do not have to drink alcohol to comply with, "The Social Contract." I do not have to drink alcohol at all for anything. So I don't. It's hard, especially at get-together's with friends and everyone is having wine or a martini. But my husband is encouraging, and so far I've done ok.
Most of all, I've begun to accept that I am enough. I do have times where I fall down the rabbit-hole of doom and despair, but for the most part I feel good about myself. I'm involved in an amazing support group, I get along with people at work, I'm confident my boss likes me, and I'm finally back at church. In spite of my pain and in the moments of sadness when I get frustrated that I even have to deal with this illness, I also know that God would not have given it to me unless I could handle it. This was a wake-up call for me. The moment I realized I had no control over my body, and never had, I was humbled to the grace of God and reminded that He has had control all along, regardless of my attempts to ignore Him. I was also reminded that I don't have to go this alone. My hope is only that I can continue on the right path and to lean on God when I need strength.
So it seems that letting go of the old me would be easy since the old me didn't seem to pleasant...but it was hard. And I still hold on to bits and pieces of the old me. I'm still cynical about most things, but I'm much more open to positivity than I was before. I have chosen to be Happy.
Labels:
Acceptance,
Breaking Barriers,
Chronic,
Closure,
Control,
Diagnosis,
Disability,
Epiphany,
Fibromyalgia,
Grief,
Honesty,
Isolation,
Outreach,
Pain,
Past,
React,
Reality,
Spoonie,
Support,
Vulnerability
Tuesday, November 13, 2012
Fibro Fog Moments
Fibro Fog...my fickle friend... Otherwise known as:
Brain Fart
Losing your place
What's that word?
Zoning out....
What were we talking about? Oh, right, Fibro Fog. One of the least physically painful symptoms of Fibromyalgia, but in my opinion is equally as frustrating as the chronic pain. How on earth could forgetting a word or zoning out be just as frustrating as hurting all of the time? I'll tell you why. Because Fibro Fog likes to rear its space-cadet head at the most inopportune moments, usually when you're actually feeling decent and doing well.
For once you're able to sit down and have a good conversation with your mom, sister, friend...whoever. You're feeling better, they're making you laugh, then you think of that funny thing that happened the other day that you should totally tell them. And then it's gone. Sometimes mid-sentence, sometimes before you can even get it out. And once more, you're reminded you aren't nearly as sharp as you once were. You aren't the old you. The one that was quick and witty, the one who could stand her ground in debate and never lose her place. Yeah, that isn't you anymore. Now you recluse from conversations, especially with people who don't know about the Fibro...people who would only look at you like you're stupid.
Then there's the times when it happens at work. You're on the phone with a client and they tell you their name, you go to write it down in the same moment and it's gone. So then you have to look like the inconsiderate Customer Service Representative who couldn't bother to remember their name and ask for it again...possibly one or two more times. Or maybe by that time you've just switched to calling them "Sir," or "Ma'am," because it's too embarrassing to ask for their name again. Thank goodness for those two words. They really save me sometimes.
My favorite though is the conversations with my husband. Two of the most common questions I get from him is, "Remember? I told you that the other day," or "We talked about that already. Did you forget?" Yes. I did forget. In fact, I usually have no recollection of the conversation at all. Like zero. It never happened. Whereas used to I would argue to the death that I was right and we absolutely did NOT talk about whatever subject it is...I have now learned to accept and basically assume he's right. Because more times than not, I am wrong. My short-term memory is basically non-existent. Sometimes I get to play the fun game of, "Did I say that out loud or did I just think it?" Never being sure can make things quite interesting.
My friends and husband like to joke about my ADD. I've never actually been diagnosed with ADD or ADHD before...and I'm honestly not sure how much of my space-cadetness (yes I just made that up) comes from the Fibro Fog and how much could possibly be attributed to something else such as OCD or ADD. All I know is I'm spacey, I forget things all the time, and my brain is usually going a BAJILLION MPH. And I do tend to get frustrated with myself when I cannot cognitively function up to par with the rest of my friends.
<What are some of your best/worst Fibro Fog moments? Please share!>
Brain Fart
Losing your place
What's that word?
Zoning out....
What were we talking about? Oh, right, Fibro Fog. One of the least physically painful symptoms of Fibromyalgia, but in my opinion is equally as frustrating as the chronic pain. How on earth could forgetting a word or zoning out be just as frustrating as hurting all of the time? I'll tell you why. Because Fibro Fog likes to rear its space-cadet head at the most inopportune moments, usually when you're actually feeling decent and doing well.
For once you're able to sit down and have a good conversation with your mom, sister, friend...whoever. You're feeling better, they're making you laugh, then you think of that funny thing that happened the other day that you should totally tell them. And then it's gone. Sometimes mid-sentence, sometimes before you can even get it out. And once more, you're reminded you aren't nearly as sharp as you once were. You aren't the old you. The one that was quick and witty, the one who could stand her ground in debate and never lose her place. Yeah, that isn't you anymore. Now you recluse from conversations, especially with people who don't know about the Fibro...people who would only look at you like you're stupid.
Then there's the times when it happens at work. You're on the phone with a client and they tell you their name, you go to write it down in the same moment and it's gone. So then you have to look like the inconsiderate Customer Service Representative who couldn't bother to remember their name and ask for it again...possibly one or two more times. Or maybe by that time you've just switched to calling them "Sir," or "Ma'am," because it's too embarrassing to ask for their name again. Thank goodness for those two words. They really save me sometimes.
My favorite though is the conversations with my husband. Two of the most common questions I get from him is, "Remember? I told you that the other day," or "We talked about that already. Did you forget?" Yes. I did forget. In fact, I usually have no recollection of the conversation at all. Like zero. It never happened. Whereas used to I would argue to the death that I was right and we absolutely did NOT talk about whatever subject it is...I have now learned to accept and basically assume he's right. Because more times than not, I am wrong. My short-term memory is basically non-existent. Sometimes I get to play the fun game of, "Did I say that out loud or did I just think it?" Never being sure can make things quite interesting.
My friends and husband like to joke about my ADD. I've never actually been diagnosed with ADD or ADHD before...and I'm honestly not sure how much of my space-cadetness (yes I just made that up) comes from the Fibro Fog and how much could possibly be attributed to something else such as OCD or ADD. All I know is I'm spacey, I forget things all the time, and my brain is usually going a BAJILLION MPH. And I do tend to get frustrated with myself when I cannot cognitively function up to par with the rest of my friends.
<What are some of your best/worst Fibro Fog moments? Please share!>
Monday, November 12, 2012
30 Things About My Illness You May Not Know
This post was originally supposed to be done during Invisible Illness Week (Sept. 10-16). At that time though I hadn't joined the awesome world of online health networking, so...I kind of missed it. However, I think the concept of this post is really interesting. My awesome Fibro-Sister, Untypically Jia, inspired me with her rawness and honesty. I hope to inspire someone else the same way with my own sincere answers to this exercise.
1. The illness(') I live with is/are:
-Fibromyalgia
-PTSD
-Depression
-Anxiety
2. I was diagnosed with it in the year:
Fibro- 2012
PTSD/Depression/Anxiety- 1999
3. But I had symptoms since:
Fibro- 2008
PTSD/Depression/Anxiety- 1992-1998???
4. The biggest adjustment I’ve had to make is:
Acknowledging my physical limits, and accepting my feelings/emotions are valid.
5. Most people assume:
I'm just a whiner, I'm lying to get out of doing things, I'm always in a bad mood because my "resting" facial expression apparently looks angry...when really I'm just in pain.
6. The hardest part about mornings are:
Waking up and getting out of bed. To this day, my Husband still helps me up.
7. My favorite medical TV show is:
House
8. A gadget I couldn’t live without is:
My phone. It keeps track of everything for me.
9. The hardest part about nights are:
Staying awake long enough to get everything done.
10. Each day I take 11-15 pills & vitamins.
11. Regarding alternative treatments I:
Receive chiropractic care as often as possible (depends on $$$), go to support group meetings, do relaxation breathing, and I do yoga/stretching every once in a while.
12. If I had to choose between an invisible illness or visible I would choose:
Having a visible illness would be easier. But I feel like I've been given an invisible one for a reason...I've learned so much from it and it has made me a better person, in spite of the pain.
13. Regarding working and career:
Thankfully I am still able to work full-time. During my diagnosis process though, it was pretty touch and go for a while. I hope to finish my education in the next few years and continue working at this institution.
14. People would be surprised to know:
Recently my husband and I decided to abstain from alcohol consumption. It's been much harder for me than I thought it would be. I didn't realize how much I was using it to cope.
15. The hardest thing to accept about my new reality has been:
I'm no longer this young little thing that can stay up all hours of the night and go out. I have to be responsible. I have to go to bed at my bed time. Otherwise, I jeopardize my career and my future.
16. Something I never thought I could do with my illness that I did was:
Reach people all over the world. Currently I have reached people in Austrailia, Germany, Malta, and the UK.
17. The commercials about my illness:
Are stupid. Except for the fact that they use the word "Fibromyalgia." They do not portray the illness well to the general public. The one that sticks out the most to me is the lady laying on the red couch while all of her friends and family do activities around her in various locations. While we do feel depressed and like we can't get up sometimes, I feel like we could better educate the general populous about the sensory overload we experience and other illness' that sometimes accompany Fibro.
18. Something I really miss doing since I was diagnosed is:
Dancing
19. It was really hard to have to give up:
My previous job.
20. A new hobby I have taken up since my diagnosis is:
Blogging and community outreach
21. If I could have one day of feeling normal again I would:
Go to Disney World. I'd get there as soon as the gates open and I'd see everything in the park until it closed down without being tired. I'd eat all of the food I'm not supposed to eat. I'd ride the rides that would normal land me in bed for a week from being jolted around. And I'd walk around on my feet all day without my legs, knees, feet, or back hurting. It would be perfect.
22. My illness has taught me:
I've learned to cherish my body. I am now more careful of what I put into my body. I make sure to let my body rest and relax when it needs to. Our nerves can only handle so much. We are our body's manager. If we over-work our body and it under-performs, we are to be held responsible.
23. Want to know a secret? One thing people say that gets under my skin is:
You know I can't just choose one.
-Handi-capable. I appreciate your optimism, but it's actually offensive.
-Just try <insert suggestion here>. It'll fix you right up.
-Does it hurt?
-Just walk it off.
-Oh come on, you're such an old fart. You can stay up later for one night.
24. But I love it when people:
-Consider my health and ask if I'm up to doing a task before they just assume.
-Ask me how I'm feeling.
-Read my blog and give me feedback.
25. My favorite motto, scripture, quote that gets me through tough times is:Revelation 21:4
And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.
26. When someone is diagnosed I’d like to tell them:
This isn't the end. There is life beyond Fibro, and it's a pretty stinking good life too, if you want it to be.
27. Something that has surprised me about living with an illness is:
I am more in touch with my body and my emotions now than I have ever been.
28. The nicest thing someone did for me when I wasn’t feeling well was:
<Insert anything my Husband has ever done for me.> I have been blessed with an amazing man. He goes out of his way every single day to make my life easier and more convenient. He remembers the things I forget due to Fibro Fog. He is most definitely my better half.
29. I’m involved with Invisible Illness Week because:
Well, I actually missed it. But I'm definitely going to be involved next year!
30. The fact that you read this list makes me feel:
Vulnerable, that you know all of these things....things I normally wouldn't share. Yet, I'm thankful for those who have taken the time to learn about Fibromyalgia. I will never be able to convey how much it means to me for you to care not only about me, but the illness itself.
1. The illness(') I live with is/are:
-Fibromyalgia
-PTSD
-Depression
-Anxiety
2. I was diagnosed with it in the year:
Fibro- 2012
PTSD/Depression/Anxiety- 1999
3. But I had symptoms since:
Fibro- 2008
PTSD/Depression/Anxiety- 1992-1998???
4. The biggest adjustment I’ve had to make is:
Acknowledging my physical limits, and accepting my feelings/emotions are valid.
5. Most people assume:
I'm just a whiner, I'm lying to get out of doing things, I'm always in a bad mood because my "resting" facial expression apparently looks angry...when really I'm just in pain.
6. The hardest part about mornings are:
Waking up and getting out of bed. To this day, my Husband still helps me up.
7. My favorite medical TV show is:
House
8. A gadget I couldn’t live without is:
My phone. It keeps track of everything for me.
9. The hardest part about nights are:
Staying awake long enough to get everything done.
10. Each day I take 11-15 pills & vitamins.
11. Regarding alternative treatments I:
Receive chiropractic care as often as possible (depends on $$$), go to support group meetings, do relaxation breathing, and I do yoga/stretching every once in a while.
12. If I had to choose between an invisible illness or visible I would choose:
Having a visible illness would be easier. But I feel like I've been given an invisible one for a reason...I've learned so much from it and it has made me a better person, in spite of the pain.
13. Regarding working and career:
Thankfully I am still able to work full-time. During my diagnosis process though, it was pretty touch and go for a while. I hope to finish my education in the next few years and continue working at this institution.
14. People would be surprised to know:
Recently my husband and I decided to abstain from alcohol consumption. It's been much harder for me than I thought it would be. I didn't realize how much I was using it to cope.
15. The hardest thing to accept about my new reality has been:
I'm no longer this young little thing that can stay up all hours of the night and go out. I have to be responsible. I have to go to bed at my bed time. Otherwise, I jeopardize my career and my future.
16. Something I never thought I could do with my illness that I did was:
Reach people all over the world. Currently I have reached people in Austrailia, Germany, Malta, and the UK.
17. The commercials about my illness:
Are stupid. Except for the fact that they use the word "Fibromyalgia." They do not portray the illness well to the general public. The one that sticks out the most to me is the lady laying on the red couch while all of her friends and family do activities around her in various locations. While we do feel depressed and like we can't get up sometimes, I feel like we could better educate the general populous about the sensory overload we experience and other illness' that sometimes accompany Fibro.
18. Something I really miss doing since I was diagnosed is:
Dancing
19. It was really hard to have to give up:
My previous job.
20. A new hobby I have taken up since my diagnosis is:
Blogging and community outreach
21. If I could have one day of feeling normal again I would:
Go to Disney World. I'd get there as soon as the gates open and I'd see everything in the park until it closed down without being tired. I'd eat all of the food I'm not supposed to eat. I'd ride the rides that would normal land me in bed for a week from being jolted around. And I'd walk around on my feet all day without my legs, knees, feet, or back hurting. It would be perfect.
22. My illness has taught me:
I've learned to cherish my body. I am now more careful of what I put into my body. I make sure to let my body rest and relax when it needs to. Our nerves can only handle so much. We are our body's manager. If we over-work our body and it under-performs, we are to be held responsible.
23. Want to know a secret? One thing people say that gets under my skin is:
You know I can't just choose one.
-Handi-capable. I appreciate your optimism, but it's actually offensive.
-Just try <insert suggestion here>. It'll fix you right up.
-Does it hurt?
-Just walk it off.
-Oh come on, you're such an old fart. You can stay up later for one night.
24. But I love it when people:
-Consider my health and ask if I'm up to doing a task before they just assume.
-Ask me how I'm feeling.
-Read my blog and give me feedback.
25. My favorite motto, scripture, quote that gets me through tough times is:Revelation 21:4
And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.
26. When someone is diagnosed I’d like to tell them:
This isn't the end. There is life beyond Fibro, and it's a pretty stinking good life too, if you want it to be.
27. Something that has surprised me about living with an illness is:
I am more in touch with my body and my emotions now than I have ever been.
28. The nicest thing someone did for me when I wasn’t feeling well was:
<Insert anything my Husband has ever done for me.> I have been blessed with an amazing man. He goes out of his way every single day to make my life easier and more convenient. He remembers the things I forget due to Fibro Fog. He is most definitely my better half.
29. I’m involved with Invisible Illness Week because:
Well, I actually missed it. But I'm definitely going to be involved next year!
30. The fact that you read this list makes me feel:
Vulnerable, that you know all of these things....things I normally wouldn't share. Yet, I'm thankful for those who have taken the time to learn about Fibromyalgia. I will never be able to convey how much it means to me for you to care not only about me, but the illness itself.
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Body vs Mind: The Civil War
I’ve been thinking about this post for quite some time now
but I just couldn’t quite figure out how to word everything I wanted to say.
Finally, I decided I’m just going to word-vomit it all down on here, do my
best to edit said word-vomit, then post it and hope someone besides me
understands what I’m trying to say. So, here goes nothin’…
Body vs Mind is like Fibromyalgia’s own Civil War. What I
mean by that is, with all of the different aspects that the Body and Mind
disagree on in cases of Fibro (or other chronic illness'), it’s like a bunch of separate battles happening all over that get
wrapped up into one big war called Fibromyalgia. Make sense? Probably not, but
I’ll try to explain.
Battle #1: My Brain
says it hurts, but the medical tests say it shouldn’t.
To reference my last
post, Fibromyalgia is invisible. When you first go to the doctor and start
describing your pain, they’re going to run every test in the book. They’ll be
looking for cartilage damage, tendon and ligament damage, auto-immune diseases,
vitamin deficiencies, red/white blood cell count, cholesterol, kidney function,
liver function…ok you get the point. If you have Fibromyalgia (and not any
other prominent issue), all of those tests are going to come back
negative/non-conclusive. They will find NOTHING. What will make the biggest
difference in your life though is if your doctor has the brains to tell you,
“It’s OK,” and that the negative test results are all part of the diagnosis
process. You ARE NOT crazy. The pain is REAL. It’s just that all of the initial
tests don’t go looking into your Central Nervous System. Even if it did, it’s
not like your CNS is holding up a big red flag that says “Oh hey! I know the
answer!” The CNS, being the complicated system that it is, does not tend to
offer up much in ways of answers when it comes to Fibro, yet. Doctors are still researching to find definitive answers for
us, and I have faith that they will.
Battle #2: My Brain
thinks I can, but my Body says otherwise.
Sure! Your brain says it would be a great idea to go out clubbing with the girls until 4am. But your
body is going to cruelly make you pay for it tomorrow (and probably for the
following week.) This battle is one we Fibromites start fighting before we even
get diagnosed. It’s the first official “Sneak Attack.” Once being diagnosed, you
will gain extra tools in your belt to understand the “enemy.” If you choose to use the tools, you CAN win this particular battle and the enemy (your body) can
slowly start becoming your friend once again. It all comes down to Acceptance. If you can accept that your Body
is changing (whether you like it or not) and that your mindset must change with
it, this battle goes down in your History as being a turning point in the long
war that is Fibromyalgia. By listening to your body, you may feel like you are
surrendering to it; and in a way you are. But by doing so you will gain the
upper-hand and become triumphant once more!
Battle #3: I know I
should listen to my doctor and exercise, but my body tells me, “No way, Jose!”
This is a battle I still fight each and every day. Even in
my younger
years, I associated exercise with pain. It was just a little more bearable
back then since I loved marching band and teaching dance was one of my jobs. By
now I’m sure you know there is currently no cure for Fibromyalgia, you should
also know that there are very few remedies researchers have found that work.
One remedy that has proven to work time and time again is exercise. I know; how
in the heck should Fibromites be expected to exercise when we are fatigued and hurt
all over? Well, here’s how: In terms of Fibro, exercise takes on a new
definition with each Fibromite. Just like each person’s pain is different, the
amount of activity that can be done differs with each individual. Once again,
IT’S OK. This is another one I’ve had a hard time coming to terms with. Just
because I used to be able to leap in the air and do the splits, doesn’t mean
that in order to exercise I have to throw myself back into an Advanced Ballet
class. (Trust me, I
tried. It was kind of tragic. Follow the link if you want a good laugh,
though.)
I understand that in Battle #2 I told you to listen to your
body. Now it’s going to seem like I’m contradicting that very statement. I’m
not, though; just consider this a grey area. In the times you feel like you
just can’t move, the BEST thing you can do for yourself is to move (in most cases.) Your worst enemies in this battle are
both your Mind AND Body. How? By being in pain, your Body is going to
discourage you from feeling like you can do one of the two things researchers
have found helps everyone with Fibro: EXERCISE!!! I’m not talking about running
a marathon or lifting weights. If you know me at all, I have proclaimed running is against my religion since the 7th grade.
I have learned from my support
group meetings that some of us walk with canes, some have to wear back and
leg braces, and some of us have other illness’ that accompany our Fibro. But
when we do our movement exercises as a group, everyone can participate. We do
some of our stretching while sitting in chairs, some standing up, and some
sitting on the floor. Just doing a small amount of movement allows blood to
flow through our achy muscles and tired joints. It is the movement and energy
flowing through our body that allows us to flush the pain/toxins out of the nerves.
What happens when we get tired and we’re hurting? We lie down or sit down,
often for long periods of time. Don’t get me wrong, I know resting is a huge
part of feeling better; but if we only
rest and never move, the energy and toxins in our nerves/muscles have nowhere
to go. Instead, they stay put and muster, resulting in even more pain.
Battle #4: Mind over Matter
I can confidently say this is a touchy phrase for all of us. At some point in time, I'm sure some idiot, (pardon my honesty), has said to you, "You can control the pain. It's just mind over matter!"...or something along those lines. And as we all know, if we could simply will the pain away, we would have a LONG time ago. While we don't have control over the fact we have been given this chronic illness burden to bear, we do have control over some of the things that make our pain worse. I feel that its extremely important for any person with a chronic illness to take responsibility over the things they can control. We are our own advocates when it comes to our health, and when the effort is put forth, there are ways to make our quality of life the best it can be in spite of chronic illness. It is OUR responsibility to do that though. Not our doctors, not our caregivers, spouses, not even the medication. While we would love to depend 100% on all of those people/things, the only thing we can truly depend on is ourselves. No one will ever know our bodies like we do. If we listen close enough, our bodies tell us exactly what we need. However, until we've accepted our new friend Fibro, for better or worse, we won't be in the right head space to be able to utilize all of the tools and hints our body gives us to make our lives better. We most work with the universe, not against it.
In my own personal struggle with Fibromyalgia, I have triumphed over Battles #1 and #2 (for the most part). My biggest struggle remains Battle #3. To this day, I have the hardest time finding the motivation to
get up off my bum and stretch or just simply move around. The fact that I am
able to do so little compared to what I used to be able to do often discourages
me. I feel like the little bit I am able
to do is insignificant. THIS IS WRONG.
I am wrong. (Go ahead and mark it
down in your calendars folks.) The truth of the matter is, when it comes to
Fibromyalgia, every little thing helps. I feel like Battle #4 is a daily battle for me. Some days I want to lie down and blame the whole world. But on my good days, I get up, take responsibility for myself, and I fight like hell.
<No matter which battle you're currently in, please feel free to reach out to me for support. If you’re discouraged about movement/stretching/exercise or if you're interested in learning relaxation techniques, I would
be happy to make recommendations that are simple based on what you are able to
do!>
Labels:
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Tuesday, November 6, 2012
Would you like a slice of Reality with your wine?
If there is one thing I can say without a doubt about
myself, it’s that I tend to do things backwards or just completely out of
order: willy-nilly, if you will. My willy-nilly nature made going through the
five stages of grief interesting to say the least. Before my diagnosis, I spent
much time being angry, then in denial about the condition my body was in. Those
were my two favorite steps, and the ones I subsequently spent (spend)
the most time on. Some days I’d pretend I was sixteen again and I could
physically do as I pleased. I even went to a dance class with Jeremy’s younger
sister, Victoria, just to show that “I still had it.” I don’t know who I was
trying to prove “it” to. Myself, I suppose. However, I quickly learned that
“it” was long gone and running as fast as Usain Bolt in the 100 meter dash,
never ever to return.
We started with stretching. This I could do, mostly. We
pointed and flexed our feet in a straddle.
What the hell…my feet
are sickling. STOP THAT. Turn out, turn out!!!
(For the non-dancers, sickling means turning your foot in, instead of out. Bad ju-ju.)
Then we began the floor combinations. The nice 30-something
year old teacher with her mid-drift showing (post-baby and looking darn good)
quickly ran through the combination. I stood at the back of the line to give
myself more opportunity to learn it. (My brain isn't that fast these days.) She added floor work to the beginning of the combo…I’ve
always hated floor work. By the time it came to be my turn I decided to just go
after it.
Fail.
“Hold your
center! Don’t fall out of your turn! UP UP! You’re behind! Chasse, Tor Jete,
Soutenu, Plie!” the too skinny teacher shouted as I made my way across the floor with the grace of a walrus on dry land.
All of the little teeny-boppers were watching, smirking. I
was mortified. Not only could I not complete a simple Pique turn without
sickling my damned foot, I couldn’t get my fat arse off the ground fast enough
to stay with the music. I stood at the back of the line once more, holding back
my tears as Victoria gave me an encouraging look.
“Don’t
worry. I’m out of shape too. I can’t do near as much stuff since I tore my
hamstring," she whispered with an encouraging smile.
That didn’t help. But she tried.
“It’s just so frustrating! I used to be able to do all of
this, easy. And now I can’t even point my toe correctly!”
Giggling, she said, “It’s ok.
Neither can half of these dumb girls either. Just have fun!"
Once again, she tried, but it didn’t help. How was I supposed to
have fun when I was failing so miserably at one of the things I used to be so
confident in? This was one of the biggest ego-destroyers I had ever
encountered.
It’s kind of funny
how Denial has its way of hiding its big, scary-self when Reality comes to give
you a swift round-house kick to the face. Right about the time my face met with
the bottom of Reality’s shoe, I decided to add “Dancing” to my list of “Things
I used to be able to do, but I can’t do anymore because of this stupid
Fibromyalgia crap.” Ok, so maybe that isn’t the exact name of the list, but you
get the idea.
There are several things on that list that I cannot do, at
all, or at least without some assistance. The list includes but is not limited
to: lifting heavy objects, vacuuming the stairs, scrubbing the bath tub, giving
the dog a bath, dancing, standing on hardwood/concrete floors for long periods
of time without proper shoe support, sitting up-right for long periods of time,
lying down for long periods of time (unless a muscle relaxer or two is
involved), crossing my legs, sitting “Indian-Style”, holding a blow-dryer….the
list really could go on and on.
You might be asking yourself at this point, “Well what on
earth can she do?” It took me an
extended amount of time to figure that out for myself. I spent a good portion
of my time hanging out in the Step 4 Lounge after I received my diagnosis. It’s
actually been one of my favorite places to frequent on and off for the last
fifteen to twenty years. Needless to say, Depression and I go way back. If we
were to have a relationship status on Facebook, it would be “It’s Complicated”.
If we were to have a song, it would probably be “I Miss You” by Blink 182. Just
call us “Catherine and Heathcliff.”
I think I’ve made my point.
In the past, we would
tango every once in a while about things from my childhood, some tango’s
lasting longer than others. Ever since I had met Jeremy though, my "dances" with
Depression were getting shorter in duration with longer periods of time in between. After Reality hit me though, I basically tried to adopt Big-D as my BFF. It took several friends’
encouragement and a TON of research for me to finally ease my way out of the
Step 4 Lounge and start inching towards Step 5 Adventure-land FunPark.
But wait, I skipped Step 3! Yes, actually I did skip Step 3.
Completely. Unfortunately (or fortunately?) with my existing knowledge of Fibro
with my mom, I didn’t bother with the "if only's"; which is odd considering
I was inducted into the Dweller’s Hall of Fame at the early age of six.
However, I knew in this case, there wouldn’t be much use in dwelling. If only (haha) I had
taken that approach from a holistic perspective, I probably could have skipped
straight to the Step 5 FunPark!
Ah….Step 5 Adventure-land FunPark. Arguably one of the best
places I have ever been in my life. It most definitely beats any park I ever
visited as a child. The entire place is tailored completely for ME (says the
only-child, with excitement)!!!!! As soon as I arrive, a good looking man that
strikingly resembles Chris Hemsworth hands me a pair of glasses that
conveniently flatter my features. When I put the glasses on, everything turns
bright! There are rainbows and happy people all around who understand everything about Fibromyalgia. There are
no stair cases to climb or uncomfortable chairs to sit in. Everything I touch
becomes as light as a feather. All sodas are sweetened with Splenda, and fresh
fruits and vegetables are available at every corner. If I start getting
fatigued, a big fluffy bed appears out of nowhere to sweep me off my feet into
a comfy, deep sleep. The best part about this place, though, is the attire. Only soft sweat
pants and t-shirts with fuzzy socks and memory foam slippers are allowed to be
worn. It IS the perfect pla….you aren’t seriously buying this crap are you?
Alright, let’s get real, shall we? Acceptance isn’t this
perfect little place where suddenly everything becomes OK again. In fact, that
place doesn’t exist and it never will. But, with the right tools and state of
mind, you can get really close. And that’s what I’ve been doing.
Yes, I have finally accepted and determined that I have
Fibromyalgia and I will continue living.
All together now, “I
have Fibromyalgia, and I WILL continue living.”
Good.
Labels:
Acceptance,
Chronic,
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Educate,
Fibromyalgia,
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