Storms of Spring

So sleeping all day is getting really old, I think it is a symptom of the Narcolepsy, or FMS, either way I wasn’t this way until I was diagnosed with FMS!!! I’m desperately trying to figure out how to get myself out of this cycle of sleeping all day & being up all night, but I really think that it is what my body naturally wants to do, which is kind of scary. I feel like I should be a vampire, dress all in black and only come out when the sun isn’t shining...the problem is, when the sun is shining is my favorite time so I really want to break out of this cycle...or move to Australia!
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Anyway, the storms of spring aren’t helping me out very much either. Even if I wanted to try something to break out of my sleep cycle, last night wouldn’t have been the time because the first major storms of spring sprang through the southeast. It was really scary to be watching SNL and have the weatherman bust in telling me that there are multiple tornadoes on the ground about 2 and a half hours away. It was such a weird and terrifying feeling. Either way, my little doggie was horrified until about 4 am, when it finally stopped storming.
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It’s the strangest thing, he (Bailey, my dog that is) was completely fine with storms until he was about 5 and then he became like all those other dogs I’ve seen, shaking and hiding. Although his hiding always has to be on either my dad’s lap or with me, interesting isn’t it. Those are the two places he feels most safe. Well last night I was up with him all night. I did some research about dogs that are scared of storms and found that they really do stop shaking, at least 80% of the their shaking, if they’re covered up by a sheet or blanket. I guess it stops static electricity, which is what makes them shake in the first place. So Bailey & I cuddled all night, I just held him under the covers & let him sleep like a human (he has his own little pillow & blankie, I know, ridiculous) and it comforts him & makes him not so terrified during the storms. It worked last night. The only downfall, I was so worried about him (& possibly the tornadoes that got as close as two hours away) that I didn’t sleep all night. Oh well, he’s worth it.
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Of course then I slept all day, woke up at 6 pm. Had dinner with my parents, where it took me 45 minutes to explain to them what the t.v. show Glee is all about and that their nephew (my cousin) had auditioned for a part in the show earlier today. I said Glee is a Fox TV show based on a show choir and they thought it was like American Idol with choirs. Took 15 minutes to get them to understand that it was actually a tv show and not a reality show. The whole conversation started by me telling them that my cousin, Devlin, auditioned for the show 2 hours prior. They couldn’t understand how I could possibly know that Devlin had just auditioned for this show in Los Angeles when we’re in this tiny mountain town, all I had to say was "twitter," and they backed off a little, although we still had to discuss twitter for 10 minutes, with nothing sinking in, even though this is about the 5th time I’ve tried to explain it. Then I continued my explanation of Glee, that it was based on a show choir...but when my father just couldn’t get the "show choir" concept, even though I was really seriously involved in a show choir all through high school, I started losing interest. I was doing all of this all while having level 7 out of 10 pain because I hadn’t even taken any medicine yet and I had a splitting headache from allergies, which are insane down here in the south. When I was so frustrated I just stopped talking about it, my parents started talking amongst themselves, my mom saying, "George, we should watch Glee so we’re ready when Devlin is on it." My dad responded with a grunt, which means "Ok." So I realized that they pretty much got it, not twitter, but Glee. Then my mom asked me when Glee is on, when I told them it was on at the same time as NCIS, they said, "Well I guess we can’t watch it then." (Sorry Devlin!) I said, "You could always DVR it." When my mom asked how you do that, I said, "No way, I’ll have to explain that one tomorrow! (That was in absolutely no way a dig on NCIS, it is one of my favorite shows, just call me Mrs. Weatherly!!!)
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I know, rough day, but you try explaining something so easy to understand for 45 minutes!!! Sometimes I feel like I’m living in a Seinfeld episode or that I’m Larry David’s long lost daughter! And this has been not just one day of my life, but many, soooooooo many......
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Anyway, watched Kendra, Chelsey Lately and saw the movie Win a Date with Tad Hamilton for the first time, wrote this post and I’ll probably read a bunch of other blog posts on FMS. I also feel like continuing my reading of the amazing poetry of William Butler Yeats.
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On my 1 to 10 Scale of Tolerable Days, (1 being unbearable and 10 being peaceful and fun) I guess today was a: 5, tolerable.

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Here’s to you & me, pain free!
MZ

Emergency Situation

Dear Friends:
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Sorry for my absence. I had an unexpected emergency surgery come up. Although it was a "small" surgery, it could have taken my life if not done immediately. I’m fine now but it was scary.
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Events like that really open your eyes about life. It made me want to jump out of bed and go do all the things I think about when I’m stuck in bed in pain. It made me want to try to ignore the pain and just push thru it to try to find a job in any way I could. It made me want to walk into law firms and say, "hey, I need a job, I have all of these qualifications and can do all of this." It made me want to do my best to sell myself until I found someone who would give me a shot. I jumped up, took a shower, got dressed, put make-up on and then was in so much pain and was so exhausted because I had been down from my surgery and from my FMS that I had to lay back down! Oh well, at least I tried, tomorrow I’ll try again, maybe I’ll make it to my car and up the driveway!
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I guess it’s motivation that came thru when I realized that my life could end. It is sort of like a rebirth. My dad was even nice to me for three weeks, then he was back to yelling at me for being in bed, weak, worthless, etc. But I had some peace for 3 weeks! I’m finding it easier right now to deal with the depressing aspects of my life, to set them aside and try to focus on making a life for myself, since I really, honestly, have not had one since I moved a year ago. I really feel like I lost myself for a while there. My "emergency situation" we’ll call it, reminded me that I do have more control over my own life than I think, even though it can feel like I have no control at all and that I’m incredibly trapped at times. I’ve decided I’m going to fight that feeling like the plague, because it does nothing but harm my harmony.
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I hope this change in my attitude can help some people. I know what it’s like to be very down, because being in constant pain can cause some serious mental confusion. I don’t mean mental illness or anything, I mean spiritual and emotional confusion. Many times I prayed to God asking why I had to bare the burden of constant pain, and if it is chronic, even with faith, when will my peace come? I still don’t have an answer to that question, but I can tell you that I feel a lot better waking up in the morning with goals, even if my goal is to just get through the day in bed because I’m in so much pain I can’t find a position that’s not painful and I can’t stop crying because the pain won’t go away, no matter what coping mechanism I try. But there are also the days I can wake up and do a couple very gentle sun salutations as the sun rises on my boat dock on the river that is surrounded by the Smokey Mountains. Then I can go make myself some of my favorite coffee and sit on the deck and just watch the morning begin while writing either my blog or working on my novel. If I feel ok, I can even try to leave the house. These days are the days that make me feel good. Life can keep going for us, we literally just have to grab onto it, no matter what we can do that day with our FMS, our lives are so different from normal people, we can’t compare them to others! If we make it thru the day feeling like we accomplished something, we should be very happy and content with ourselves. And remember, try to do things for yourself or with your children that pleases your heart and spirit. You need to stop and feel your intuition to figure out what that is. These are the events that cleanse and please the soul, and really make us happy, the best medicine for us! I’m done with my rambling, I just want everyone with pain to find ways to soothe themselves, I know how hard it is to live when the pain is on fire...
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Here’s to you and me, pain free!
MZ

How to Win Friends and Influence Attention

As previously mentioned, I decided to start this blog so I had a place to state all these thoughts that have been trapped in my head with no place to go. I have been in the midst of a familiar situation, it just hasn’t been around since I first started having to explain to my friends what was going on with my body, which was about 10 years ago.
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A decade ago, I didn’t really know how to explain what was wrong with me very well. Luckily I was explaining it to my closest friends and family who had known me most of my life, so I had the best, most willing and wanting to understand, to explain it to. So as each pain and fatigue symptom persisted, I knew my loved ones were listening.
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But in early May of 2009, I had to leave most of these people and move to a new place, where no one but my parents knew me, back into a world where very few people had even heard the word, "Fibromyalgia" not to mention that, after 10 years, I had realized that it served me best, especially at the beginning of any kind of relationship, not to mention my illness. Worst of all, now I was dealing with severe depression, because I missed my friends terribly, and still do, and was newly diagnosed with Narcolepsy, a scary and mysterious new disease I still am having a hard time understanding.
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Once I obtained employment in Tennessee, I thought I needed to be extra careful to keep my chronic pain hidden and I thought I was doing a really good job, but I soon came to find out that almost every employee in the small office I worked in was talking and wondering about what could be wrong with me. One of them being someone who is still one of my friends to this day. The only friend I have made, in a year. I am very thankful for her, more than I can explain. This person is who I really want to talk about in this posting.
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The other day, I had a very hard conversation with this person that I know is a friend, but I have found it very hard to explain Fibromyalgia (FMS) to her. I know when I re-located, I moved into what people call, "the Bible Belt." Where I came from, I came to consider it ignorant not to remain open to all religions, races and sexual orientations. I have had a hard time trying to figure out how to deal with this "Bible Belt" concept. I was personally raised Catholic, in every sense of the word. My friend and I actually became close because I asked her if I could come to her Bible study on Wednesdays. It seemed very important to her. All I knew was that I had just bought a Catholic Study Bible before I left Michigan to try to understand the religion that was so important to my parents, but it was so overwhelming, and I didn’t know where to start. My friend seemed so happy because of her church, I figured I could approach Bible Study as a sort of "Book Club" so that I could learn about the Bible and maybe have some of that happiness rub off on me too. I brought my Bible to work and at lunch we compared it to her Bible and realized that they were saying the same thing, just with different words. I felt the word differences were poetic from both Bibles, which made the idea of studying them even more intriguing. Slowly but surely, I realized that God put a light in my friend that I was not so familiar with and my friend told me that, even though I may not have known just how strongly, I was a woman of Jesus and I’m filled with God’s light too. Coming from my friend, that is by far the highest compliment I could receive.
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Quickly people at work started realizing that I was becoming friends with this woman, almost 20 years older than me. They couldn’t believe why a middle-upper class (that’s my parents b/c it’s definitely not me) white woman, would be the only white person going to an all black church called the New Zion Missionary Baptist Church with my Catholic Study Bible. Some of the white Baptists at work even told me that I needed to learn the ways of the "South" and learn that the churches are segregated. I’ve never felt more like I stepped back into the 1950's in my life. I cried hard the night I was told that. I wondered if it was true and I missed Michigan so badly that day and night I felt it in my teeth, because I never even heard the word segregated except in my history books. It was wonderfully sweet justice in my mind when I went to my friend’s church and everyone treated me like a brand new friend for the first day I was there, everyone more eager than the next to get their chance to introduce themselves to me. As they realized I was going to keep coming back, each time they welcomed me with open arms, literally, hugs all around. It’s been about six months now and they call me Sister "Sista" Amy, because we are all brothers and sisters of God’s family. I’ve never felt more comfortable except in my own family. Believe me, I was quick to tell the people who told me the churches are segregated. The person’s response, "don’t expect it to be the same way if you took Paula to your church." Actually, it would be no problem if I took Paula to my Catholic Church, would it be a problem for a white person to take a black person to their Babptist church in the South? That’s what I’d really like to know???
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Anyway, I really love my new friend, but there was one problem, I knew she didn’t believe in my medical problems, too many times she asked if I could be bringing these problems on myself for attention or by thinking them into being. It hurt tremendously, but I didn’t know her well enough to unleash the wrath of what most people would get. It took a long time for me to figure out what to say... but after I went through a particularly difficult string of abusive words from a family member about how the tremendous pain and exhaustion I had just gone through in the past week were all my fault, I couldn’t handle this friend’s words of the same. I finally just said, it is words like those that drive me over the edge. This is an actual disease. It has nothing to do with attention and I used the example about how I’m always crying about how my father berates me. Prior to being sick, my father and I had a good relationship. Why would I want his attention to go from good to constant berating and such emotionally abusive words as to cause me suicidal ideation? There was a time when this friend saw me through one of these suicidal moments, she knows how far I can sink if I can’t find ways to cope. Luckily I learned how to ask for help. But, I lost most of my "friends," I get very little attention from them now. I’d really like to know what attention these sick people are getting that everyone is talking about when I’m told my disease is just something I’m doing for attention, because I’m sure not getting it. I’ve lost everything, I live in my parents basement, 600 miles away from my friends, life and time passing me by, I’m mostly incapable of dating or a social life, but this is the type of attention I’ve been yearning for my whole life, just the ability to bitch about it! Just kidding, although it did feel good to get that out, just like it did to say it to my friend after months of her asking if attention seeking was the purpose of my complaints. My friend finally got it.
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That day I was meeting with one of my doctors. I found a pamphlet on Fibromyalgia, how loved ones can support those with FMS. I met up with my friend at Book Club, I mean Bible Study, after the appointment. I gave her the pamphlet and she read it. The first thing she said to me is, "it’s an actual, real disease." I simply said, "yes it is."
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Here’s to you and me, pain free!
MZ

Please Don't Blame Me!

*Please note: This post was originally written on February 9, 2010 but, due to the fact that I live in the mountains, basically out where people go to get away from technology, the only access to the Internet I'm privy to is dial-up. Well, I guess "something" happened to my phone line (I've been waiting almost two weeks for an answer to this mysterious question with no response) and they have FINALLY fixed the phone line. They unfortunately did not tell me what was actually wrong with the phone line but it is a bit easier not to care anymore now that it is fixed. Anyway...I'm so glad I can finally do my first post, and if I'm ever absent for a while, you can assume that something has happened to my wonderful internet/phone line!*

Fibromyalgia (FMS) is so hard to explain, for everyone involved. The loved ones of the afflicted can take several positions. Most loved ones want to be supportive, some offer a lot of assistance, i.e. helping prepare meals, helping with laundry, grocery shopping, doctors’ appointments, mainly helping while their loved ones’ life goes from functioning to needing to depend on others. If all those afflicted had a dozen relatives/friends like these, they would be so lucky and blessed, even just to have one.

There are other people though, that are so hard to deal with, and these are those that blame the afflicted for their symptoms. Reading and research has shown me, unfortunately, that I’m not alone in being blamed by a close family member for the symptoms of my FMS. FMS is an invisible disease. Those afflicted do not "look" sick. I know I look healthy. What people don’t know is that it takes a lot of make-up and a lot of time to look so "healthy." The reason I started this blog is because I have a family member who constantly blames me, as a person, for my FMS. Even though I have lost almost everything, my home, my ability for employment, my independence, my hope for a family as I lost all boyfriends and a fiancé due to my inability to do a lot of things, i.e. hiking, night life, quick spontaneity and fears that I could not get off of my medicine to have a family, this family member still feels that I have brought my symptoms on myself (I honestly don’t know how) and not only do they blatantly say that to my face, they actually (and constantly) yell at me because I don’t somehow magically overcome them or make them go away. Life with FMS is such a struggle, and then with this added pressure it can, at times, make life seem too hard. I have even strongly thought of suicide, not even so much because of how hard my FMS struggle has been, but because of the verbal abuse I suffer from this person. The yelling that it is me doing it, even though I have seen a doctor every month for 10 years. It’s more the fact that they don’t care where my pain is in my body, even after so long, or that if I sleep too long during the day, I’m lazy and unmotivated and it’s all my fault and all the yelling, all while my body is screaming at me, my muscles were already spasming in my mid-back and usually in my neck and shoulders, like I had worked out too hard and was very sore and had a "charlie horse" in that area, but then on top of it, the more I was yelled at, the more the pain would throb and twist, and even though I’ve tried to just ignore their incredibly painful words or somehow not let it hurt so much, I can’t control how much the words hurt. I would just cry and cry, it was like my soul was literally screaming at this person and at God, how could my life have come to this? How could I be so trapped in such physical and mental pain? Obviously these questions have not been answered, I’m still right in the middle of this, just today I suffered under these words and this abuse. I cried so hard my eyes are burning right now as I’m looking at this computer screen. How can I get every person in my life to understand what I’m going through and be understanding, except for one of the people who is supposed to love me the most?

I started this blog to be a place for others with Fibromyalgia, chronic pain, ME/CFS, MS or any other type of pain or wanting to talk about anything that they have a hard time talking about with others, to be able to have a place to talk about their hardships without feeling guilty or like they’re doing something wrong. I don’t know about others, but I have been strongly discouraged not to talk about my woes too often at the risk of being a downer, losing friends, or just being that person that is depressing to talk to because they’re never happy. I know I’m that person right now. I can tell that people are uncomfortable talking to me. They ask how I’m doing and I say, "ok" but these people know me too well, they know something’s wrong and ask about it. I try to give them a "Cliff Notes" version and I realize they really don’t want to hear it. Let’s see, I hurt all the time, I can’t manage to stay awake really at all, I have no job or money and I’m starting to get into debt and it’s scary, I have no friends where I live, I’m constantly berated by my family yet I’m trapped in my parents home because they are the only people who have offered to help me out, feed me, put a roof over my head. I have one friend who talks to me, but even he always seems to put a time limit on our conversations. I think it’s been about a year since I’ve had any type of good news to tell anyone. I have really been holding most of this info in for 10 years and like I said, I contemplated suicide before I learned that writing in my journal was a release that made me feel better enough to realize and remember that I have way more self worth than to ever kill myself. I’ve lived life this long, and I know I still have a long time to go and I’m not going to lie, the idea of living that long life still in constant pain is scary, but the longer I live with this, the more I learn how to help myself. Most importantly though, I really don’t want anyone else to feel that they cannot talk about the negative and desperate aspects of FMS, or life, just because they were cautioned or felt they should not to talk about them. I agree it shouldn’t be the only concentration, but everyone needs to talk about how hard life is. Only someone without FMS, would suggest not to talk about its negative aspects, our emotions cannot be denied, they are a part of us. Maybe it is just me who couldn’t handle holding the trauma of being in constant pain in, but even if I can offer a safe space for just one person, I would feel maybe I helped the FMS community. I would like to say that anyone is also welcome to leave an email if they don’t feel comfortable writing a comment because what they have to say is too personal.

I will also try to offer as much information and research on FMS from everything I have learned, which is quite a bit considering I love to continuously look up information whether in books or on the internet. A lot of people may find this information useful if they have not been able to do this research on their own. I will always state my sources so people can look into the resources themselves. I am not a doctor so I know it’s important to state where I get my information from, although sometimes I’m just going to state my own opinions and thoughts and I will always specify that they are my own.

Oh, and, this blog will definitely not always be about FMS. I have a lot of interests, all of which I have listed in my profile and I intend to write about whatever comes to mind. When I talk about "Writing Thru Pain" I want people to know that I mean any kind of pain. Sometimes it is much easier to write about it and see comments from strangers, than try to talk to friends and family you know and love and start problems!

There are so many fun things in this life that have kept me going thru all of this pain, most of which I listed in my interest section. I will be looking for tips and advice regarding a lot of them. For example, I just started learning more about photography because I was given a really nice camera as a bonus at my old job in Michigan before I moved to Tennessee and I’m really trying to learn how to be a good photographer so that I can take pictures to go with articles I’m writing to submit to newspapers as a freelance journalist and writer. People say my pictures are good, so that is encouraging, but I need to know what makes a picture "good?" Any comments and/or suggestions would be greatly appreciated!!!

Anyway, if you want to write, comment or randomly say anything about any of my interests, or yours, please do. Unfortunately, I spend a lot of time laying down due to my FMS, but fortunately it gives me a lot of time to write, which is absolutely my favorite thing to do. The world works in mysterious ways doesn’t it!!!

Here’s to you & me, pain free!!!

MZ