We Will Not All Sleep, but We Shall All Be Changed

Next week it will be one year since I was diagnosed with Fibromyalgia. I’ve learned a lot about life and about myself in that time and in the time leading up to my diagnoses.

I’ll try not to repeat things from previous posts, but here are some things I’ve learned and observed which I haven’t already mentioned.

Part 1:

I really thought once the doctors found the problem, things would get better. I believed once I could name what was wrong with me, other people would stop judging me, and that I could maybe start to get better. Unfortunately, that’s not the way it is. People are going to judge things they know not of, and there are rarely cures for our hardships.

Most people are going to see life through the lenses of what they have experienced. It is hard for some people to see my life and not feel that I should be able to live life like they do. I live day to day, screaming for someone to understand me. For people not to judge me. I thought that as soon as I could tell people why I practically don’t work, they would stop judging (Did I not know people AT ALL?). But unfortunately, some people are always quick to try to find fault with me. They want to make it my fault for being sick. They ask about my diet, my level of exercise, my sleep, and anything else they think should turn my situation around.

Well, sorry. I’ve tried going vegetarian, I’ve tried eating nothing with MSG, I’ve tried cutting out all the typical problem foods, I’ve tried going gluten free. I’ve tried supplements and other homeopathic remedies. Nothing has worked, so please do not ask about my diet. Right now I’m just trying to stay at a healthy weight, which means I eat whatever I can swallow, whenever I can.

I don’t even want to talk about exercising. Try exercising when your head hurts so badly you think about which knife you own is the biggest and sharpest, and how it really isn’t a good idea to amputate your head. And that’s just one part of the pain. I’m not going to go into trying to exercise when everything else hurts also. I’ve tried regular exercise, and guess what. It did nothing. Now my motto is, I’m active when I can be.

And don’t ask an insomniac about sleep. None of us enjoy going on three or four (or less) hours of sleep. We’ve read the literature. We know you need regular bedtime habits. Some of us even follow all the guidelines, but there is still no helping spending hours trying to fall asleep and/or waking in the middle of the night just so you can listen to your significant other enjoy their sleep.

**One disclaimer is that there are some people who can ask all of the above questions with such sensitivity that I have never felt anything but support and a desire to see me be well. Those people I adore. My friend Cathy is always exemplary at asking caring, meaningful questions. Just ask her if you want any advise 😉 However there are those who ask with such an attitude that it makes me really angry and defensive. Those are the people I’m talking about. Oh, and I’m not talking about questions such as, how are you sleeping?, or have you been eating ok? It’s the questions like, do you go to bed at the same time and wake up at the same time every day?, or have you been eating healthy? Those questions drive me crazy. What it comes down to is intention. I can usually tell the difference between someone who asks because they care deeply, and those who just don’t. So unless you really truly care, don’t ask me. I don’t want your questions just so you can feel important, smart, or to satisfy some obligatory Christian caring thing.

I’ve tried concealing the “sick” part of me to save myself from all the judgmental insensitive people out there. The problem is that I feel God has asked me to try to shine a light for people in similar situations and to be authentic. I’m really tired of hiding myself just to make other people feel better, or so they will like me. I want to be transparent, even if it means being hurt in the process. I want to live in the light, scars and all. I want to stop being afraid of what people think, and start being me.

Part 2:

One thing I regularly get told is, “But you don’t look sick”. Oh sorry, you’re right. I’m FAKING it. What do they want me to say? Yes, I just love spending almost all my time at home, lonely. I love canceling things, missing out on fun things and spending time with friends. I just love pretending to be sick. Note all the sarcasm.  Not everyone has the advantage of looking like something is wrong with them (I’m not saying I WANT to look sick, or that it is better to look sick, I’m just talking about the disadvantage is can be). Some of us have to be sick all the time and have other people assume we’re faking it because they cannot see it. They assume because our illness cannot be seen, that our illness must be in our heads or that we just want attention. Honey, I got more attention before all this, so definitely NOT an attention thing. And if it is in my head, which it’s not, then that doesn’t make the pain any less real.

Another fun one I hear regularly is, “Enjoy your health while you’re young”. HA HA HA HA! Dumb asses. I vacillate between wanting to hit them and laughing my head off. Because really. That’s just a hilariously ironic thing to say to me, who they know nothing about other than said young factor. I hope they say that someday to someone who has cancer (not really, but you get the idea).

Part 3:

I’ve learned God says no. No, and not yet (which I will be using interchangeably for simplicity sake) . This is something I’ve known since middle school because that’s what my church taught me to say if someone I prayed for didn’t get healed. Strange then that when I became sick people acted like it was my fault that I wasn’t healed. Hmm. Can anyone guess why I’m allergic to most people asking if they can pray for me? Anyway, it’s one thing to accept that God says no to other people, another thing entirely to realize God has said no to you. Not just that you can’t get married when you’re 16 because your parents won’t sign the proper forms, or no to that new car you want. No to living a normal life. No to a life of being well. No to feeling assurance that you’ll be able to afford your next doctor appointment or your medication.

I almost called this blog post, “What Happens When God Says No”, and then found out I had a lot more to say than that. But, there are multiple things that happened to me when I realized God was saying no to me and after he said no. I’ve had to go through these feelings multiple times over the last several years. I don’t give up praying and I retain hope that one day I will not live in such pain, but unfortunately that means I’ve had to accept “no” year after year.

1. I’ve felt a lot of sadness. Not exactly the type of sadness that comes with depression, just sadness. Tears running down your face, frustrated sadness.

2. I have felt such a deep loss of who I am, I have felt at times like I can’t find myself. It’s better now, but sometimes I have felt that I didn’t know who I was without the ability to carry out my desires and ambitions. I actually think that God has stripped me down to my core self by taking away the ability to do all the things I wanted. By taking those away, I’ve had to hunt for who I am without it all. I’m still finding myself, but it’s a much stronger self than before.

3. I have felt so much anger at God for letting this be my life. I have fortunately not spent great periods of time being angry at Him, but I have still had times of feeling intensely angry. I just didn’t/don’t understand why. If I just saw a good reason for it or even if I just saw an end in sight, it wouldn’t feel so much like he doesn’t love me as much as he loves everyone else. Why does He bless other people so much more than me? I think it’s ok to have times of anger and questioning with God.  Through my questioning and anger, I believe I have just a little better idea who God is. I used to FEEL that God loved people. Now, I KNOW He loves people. I had a lot of things I felt about God, but now through my anger and questioning there are more things I know, even if I don’t always feel them. I’ll take knowing over feeling every time. I think I’m stronger in my faith now than before.

4. I have worked so hard to not be jealous of the lives other people are living. Lives with careers. Lives with children. Lives with… living. It’s a constant battle to remind myself that everyone has their own problems and burdens, and that they’re just different than mine. The problem is that I can tell myself that all I want, but it still doesn’t change what I see. Lives of ease and blessing (see 3).

5. I have learned to feel acceptance and peace. Still no happiness to be found per se, but acceptance that God is in control. Still not always happy with his decisions, but I accept that he has told me no. I feel a calm about my life. I don’t feel that my boat is in danger of capsizing.

6. God saying no has allowed me to move on. See life for what it is, and try to find things I can do that bring meaning and enjoyment to my life. Ok, so I can’t have a career or kids right now. I can enjoy making things with my hands. Even though knitting and crocheting often hurts, it gives me a deep satisfaction to see what I have made out of some balls of yarn. I can enjoy this time with my husband, and give him my full attention. I can’t spend my time outside, but I can sit under our skylights and read. I can’t spend as much time with people as I’d like, but I can read people’s stories and let them touch me and change me. I can cry for people and laugh with people, even if we are not face to face. I can learn as much as I want when I am able. I can learn how different people think and feel. I can learn other languages and about other cultures. Not everyone has the time to do all that, so in that way, I am blessed.

8. I have a much stronger desire to love people now. Not that I didn’t before, but now it is something I almost can’t even control. I even want to love on the people who have hurt me deeply, if they would let me. If someone is hurting, I hurt too. I cry ALL THE TIME, and it has nothing to do with feeling depressed. It can be really annoying. Sitting in a coffee shop reading a touching story and crying.

This love thing isn’t exactly correlated to God saying no, but it feels related to me, even if I can’t explain why. Maybe it has to do with that fact that I just didn’t feel all this love in me before. Sometimes it feels that my heart is going to burst if I can’t let some love out. I also think that sometimes broken people have the biggest capacity for loving. When God said no to healing me, I broke. This whole thing has broken me. Now, I just want to be there for people who are hurt or broken, because I have been there. I AM there sometimes.

The strange thing is that at this point, sitting on the couch, sweating in my hot second floor apartment, I’m ok with it. Sure, some days I’m angry. Some days I rant at God for making me this way, while most of the people I know are living perfectly healthy lives. Today though, even though I have a migraine and I am spending the rest of my day alone, I’m at peace. I’m not exactly happy, but I’m at peace.

What will I learn in the next 365 days? Most of it will probably be hard, but it will all be good. “We will not all sleep, but we shall all be changed”. I’m looking forward to the change.

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Aside

Yes, I realize it has been forever since my last post. I think I was just too discouraged to blog. So much pain, and so little energy. I’m still exhausted, and my body is not liking this cold, however I have some semi-exciting news to share.

A while ago my brother had recommended something called binaural beats which as I understand it uses a different frequency in each ear to essentially trick your brain into hearing a third low frequency which the human ear is incapable of hearing. For example if 300 hz was played in one ear and 302.5 hz was played in the other ear, your brain would translate that into another frequency of 2.5 hz. Now I do not know the exact lingo to use, but essentially 2.5 hz is the frequency that your brain uses to try and combat pain naturally. I’ve read that that frequency tricks your brain into producing its natural pain relief chemicals, but I’m not entirely sure if that’s exactly what happens or not.

All I know is that at the time that my brother suggested it, the mp3 I found for it was $4.00, and I didn’t want to spend that on what could be a hoax. But then about a month ago I was so desperate for relief from migraine after migraine, that I decided to revisit it. At that point I found some free binaural beats that I tried. I’m not going to lie, I was skeptical, and it didn’t work the first several times I tried it. It was relaxing though, so even though I didn’t notice a decrease in pain, I continued to use them. Then all of a sudden, out of the blue, it worked. I figured it was a fluke, but I was hopeful enough to keep trying it. Since then it has worked all but 3 times, which when you have as many migraines as me is a huge deal. It has not helped with my muscle, joint, or nerve pain, but any progress is good progress. And besides, migraines were the worst symptom of Fibromyalgia for me, so having some relief from them is huge. Whether it’s the binaural beats or something else, I don’t know, but I’m grateful for what I’m given. I hope that it continues to work, but you’ll definitely hear if it doesn’t.

Pain. Pour me another glass I suppose, because pills don’t touch this shit.

Don’t worry, I’m not abusing alcohol if the above title has you scared, but I did want to give an idea of what I’m talking about. Pain. Excruciating pain all day, everyday. Pain which is rarely helped with medication. People ask, “How are you feeling today?” The answer: I’m in pain. But I can’t answer that way every time.

So what does this mean? This means that I have to decide if the amount of pain I’m in is worse than usual. If yes, then I answer that I’m not feeling well. If the pain is about normal, then I say, “Fine. Thanks for asking”… kind of. I’m usually too busy trying to decide if I just lied to remember to thank them for asking.

The next thing to ask is what exactly is pain? Well, Dictionary.com describes it as:

 noun

1. physical suffering or distress, as due to injury, illness, etc.
2. a distressing sensation in a particular part of the body: a back pain.

3. mental or emotional suffering or torment: I am sorry my news causes you such pain.

I experience many different types of pain. As far as physical pain goes, I experience frequent migraines, unexplained muscle pain, joint pain, stomach/digestion pain no matter what my diet is, mild to moderate skin and soft tissue sensitivity, and stabbing and stinging nerve pain all over my body.
As far as emotional pain, I experience severe anxiety; bouts of depression; feelings of inadequacy, failure, and solitude; and lots of fear. Fear of commitment, being in a situation which may cause me to faint, dropping things and spilling things due to my muscle weakness, people judging me as ditsy or stupid due to my fibrofog, and going new places… doing new things… essentially anything new. And of course all of this is made worse by not being able to sleep adequately, or sometimes just not being able to sleep. Period.
Almost all of these emotional problems are either caused by the condition itself, or as a result of living with this condition. I was not born a fearful person, but my experiences with Fibromyalgia have formed a person who is scared of almost everything. New things, sleeping through my alarm, saying the wrong thing, dropping things, going out of town, cancelling commitments and disappointing people, etc. etc…
These however, are not things I can just spout out to anyone who asks. Such a simple question, but such a complex answer. “How are you feeling today?” How am I supposed to answer? I want to be honest and down-to-earth, without making anyone uncomfortable or annoyed. Also, I’m allergic to bull-shit, so the “I’m blessed”, or “God is good” answers may cause me to spontaneously rip out my hair and become a foul-mouthed sailor, even if I ultimately believe they are true answers.
If only I could make anyone who asks me that question sign a waiver saying they will not hold me responsible if I answer their question honestly and they don’t like the answer for one reason or another. After all, they asked, right?
But no, I have to gauge whether the truth will make people uncomfortable or will drag them down with me – something I never want to do.
So, how am I today, you ask. Well, I will answer, but if you don’t want the uncomfortable truth, please read no further.
Today, my head is pounding; I want to remove my jaw to get relief from the excruciating pain caused by not wearing my night splint due to throwing up yesterday and not being allowed to wear it due to said incidence – no, I’m not pregnant, in case you were wondering; my neck and shoulders are cramping up so that no position is comfortable; I’m slapping various body parts due to feeling like I’m being stung by a yellow jacket over and over again; my skin and soft tissues hurt from just being touched wrong or lightly bumped; my joints hurt without even moving; I’m nauseous due to all the pain; I’m exhausted; I’m anxious from dealing with insurance and medical bills- thank you Fibro for those, btw; I’m battling depression from all the pain and uncertainty in my life; I’m lonely from spending all this time at home while Gabe works to provide for us; and to top it all off I’m trying to figure out how to be a flawed person who tries to help and support other people, as well as be the person God wants me to be.
Let me ask you. How would you answer if this was your truth?

Link

Beauty From Pain

I want to share a song that has been a favorite of mine for those times in my life when I feel like I’m going to suffocate in the darkness. Years ago when I was struggling with intense emotional and physical pain, this song allowed me to mourn but also allowed me to hope.

Soon after this song came out, I remember sitting in my car and crying to the point of exhaustion. I found an unopened Superchic[k] cd I had found for free at work in the glove box and happened to come across this song. I would play it over and over – just as I did today – and cry tears of sorrow, but also of hope.

Every time I am in the complete darkness of the circumstances of my life, God brings me to the point of being able to look back and see the beauty that came from my pain.

Right this second, I’m having difficulty imagining that any beauty could come from any of the sources of my pain. They say that when it rains it pours, and right now it’s pouring. Each individual source of pain seems tolerable, but adding them together just seems like more than I can bare sometimes. It’s time for me to remember how God has been faithful to me in the past and he will be again. Beauty will come from my pain.

Changing the Dream

“You can be anything and do anything…”

 I remember sitting at my desk in high school, dreaming of what I would do with my life. I had so many dreams and aspirations. While the girls next to me talked about boys, I was dreaming up a life where I was doing amazing things and changing people’s lives. Now, the girls who were giggling and flirting with boys are making a difference, and I am barely holding my head above water.

 I can’t help but cry out to God about my sorrow over a life which looked so full which now promises a lifetime of pain. I grew up around Christians who regularly act like if people had enough faith God would heal them, and yet here I am still sick and in daily pain.

 No wonder people are so turned off by Christianity. If I as a Christian feel judgment heaped on me by people who claim the same Lord as me, how much more might someone feel who does not claim Jesus as their savior? I am regularly turned off by the religion which I myself am part of. The judgement, the hate, and the hypocrisy which I see daily is enough to make me want to leave behind the church and take Jesus with me. The Jesus I see in scripture is not the Jesus I see in most churches today. The Jesus I see who loved tax-collectors, the sick, and prostitutes is not often shown in the church.

 I remember being told that I shouldn’t have non-Christian friends because they would cause me to backslide. That was a direction I ignored, but there were many other wrong and often judgmental attitudes which I unfortunately accepted at the time.

 Now I am a target of judgment by people who believe that if I was a “good enough” Christian, God would heal me. If I had enough faith I would be healthy. And rich, apparently – Thank you, prosperity theology, for your excellence in judging people, and your ineptitude in loving God’s people – and by people I mean, all people. Not just the ones that live up to your standard.

 What about Sarah who laughed when God said she would have a son? God took her barren womb and gave her a son, despite her continual lack of faith. Or, what about Job? Are we to take his extreme suffering and say that he brought all that on himself? The Bible says that God himself called Job a blameless and upright man (Job 1:8) and he still allowed Satan to take away everything Job held dear. Job challenges me in my response to illness. Through loss and illness, Job mourned and yet still praised God. He also ignored the accusations and judgments of his friends.

 I am trying so hard not to let what people think of me affect how I view myself, but it is very hard not to take on other people’s judgments of me when I already feel like a person who does not have the ability to give anything substantial to the world and the people around me.

 I have to believe there is a greater purpose in all this, but it feels like such an impossibility to do anything worthy of being born. I wanted so much more for my life and believed I was capable of doing anything I wanted. I was not prepared for the harsh realities of life. And sometimes, you can’t do everything you wanted.

I never thought I would have to figure out a different definition of success or worth. I never thought I’d have to mourn the death of a previous life which looked so much brighter than the current life I live.

 I really wanted to write a blog which was a positive representation of living with Fibromyalgia, but unfortunately I’ve found that for me to write that blog, I’d have to be dishonest most of the time, and I wouldn’t be giving a realistic representation of how it feels living with this debilitating condition.

Besides, this is a journey, and most journeys are not perfect. I have to stumble before I really know how to stand.

It’s a Mad, Mad, Mad, Mad Facebook World

I have a problem. Maybe you can relate. Facebook.

I have considered deleting my Facebook on multiple occasions, but have usually opted to cut 50-100 friends each time instead. Why? This is hard to explain. Mostly I just want to simplify my life, and this is something that I have control over — as someone with chronic health conditions, it can be hard not to become a control-freak — you just want to be able to control SOMETHING since you cannot always control your own body.

I also I have mixed emotions about my Facebook feed. On one hand, I like to know what is going on in people’s lives — especially those I do not see often but do still care about. On the other hand, it can be terribly hard to go through and see people doing things I cannot do. The hardest thing though is reading status updates that ooze judgement. (Now, if someone I have unfriended happens to read this, don’t jump to conclussions. It probably had more to do with the simplifying thing, and less to do with you ever saying anything offensive. Believe me, I’m still friends with people who offend me on a regular basis.)

You should hear my inner dialogue at times. I suspect it would sound a little bit like Gollum from J.R.R. Tolkien’s epic novels. The humanness that first reads said judgmental update says, “Stupid hobbitses! Mean, nasty hobbitses! Gollum! Gollum!” (Don’t forget to read each exclaimed “Gollum!” as if you’re coughing up phlegm.)

Then the good part of me, which I shall call Smeagol, wants to be compassionate and understanding. This is when I fight Gollum back saying, “But the hobbitses are our friends! They wouldn’t hurt us!”

And so it goes. Back and forth. Gollum on my left shoulder. Smeagol on my right. By the end of my inner debate, I’m usually thoroughly confused and utterly exhausted.

How I wish I could just be Smeagol at all times, always giving people the benefit of the doubt, and assuming they are well-meaning. Unfortunately, I feel that my first response is usually some — well — choice words in the direction of the “speaker” of said status update.

It is so easy as an individual with some particularly sensitive nerves, to forget my mantra of loving ALL, especially when I feel that someone is being unloving in their ideas and in the  things they say. I am learning that when i get bent out of shape over someone’s judgment, it is very easy for me to judge them for their judgment. Geez, it gets complicated, doesn’t it?

I so often say there is no “scale” when it comes to sin. That no one sin is worse than another, yet I have the hardest time loving insensitive, rigid, judgmental people and have to try hard not to see them as the worst sinners. Isn’t that a judgement though? I’m judging the judgers!

I’m also learning to try not to take everything so personally. I will start by saying that I am not on disability, and nor do we get any help from the government (and I’m going to even go as far as to say that I’m not against government aid because I’m a compassionate person who likes to help people — gasp! the nerve! –, I just personally choose not to receive) but it can still be incredibly frustrating when people, usually around election time, go off about all the lazy bums out there who just need to get off their asses and go to work. In my heart of hearts, I know they are not talking about me. However, it still hurts my heart a little bit. Not just for me, but for those who are being lumped in with the so called “lazy butts” by those who have not tried — or have no desire to try — to put themselves in someone else’s shoes.

This whole growing older thing is tough. Figuring out what I believe is tough. I wasn’t taught how to do this in church — which is a whole different issue which I won’t go into… at least for now. I’m pretty sure I would go crazy if I had all these ethical questions, and there were no like-minded people to talk to, or at least those with an open mind to discuss these things without judging my questions or where I end up at the end of searching for answers.

I really wish people didn’t always think it was their job to be the morality police, and squash down anyone’s opinion which is not a cookie cutter replica of their own. I personally love to learn from other people’s opinions and experiences as long as they’re ok with me either a. having a different opinion, or b. not being sure exactly what my opinion is by the end of the conversation. No body wants to be a clone, so why does everyone seem to be so offended when someone isn’t, well, them?

Do You Have a Spoon I Can Borrow?

The Spoon Theory

How many spoons do you have today?
How many spoons do you have today?

A friend from high school recently reminded me of The Spoon Theory by Christine Miserandino. I love The Spoon Theory. It so easily expresses how I have to live day to day. Essentially the theory explains how everyone has a specific number of spoons in a given day — some people more than others, some people even seem to have unlimited spoons– and how each activity requires a spoon. Once all your spoons are used up, you’re done for the day unless you choose to borrow from the next day, but then you won’t be able to do as much on that day. Plus, you may pay the consequence of borrowing — a flare-up.

For someone with a chronic illness, they get fewer spoons per day, and they have to use spoons on the little things as well as the big things. Getting dressed in the morning requires a spoon, as does preparing a meal, or driving to work — and that’s just the drive, folks.

Most days I don’t know how many spoons I’m going to have. I usually just take things a step at a time and decide if I have a spoon to give — some day I might be able to learn to know how many spoons I’ll have in a day, but as of now it’s kind of a guessing game.

I’m learning to prioritize. I’m really having to decide what is important in life. I have so far come to this conclusion. People are important to me. My husband is important to me. My family is important to me. My friends are important to me. Even strangers are important to me. Organizing my house, not so much.

I’m often embarrassed by the condition of my apartment. I usually feel like it looks like some force of nature came in and took over. Tornado, hurricane, tsunami, or some days all of the above. If I was feeling particularly transparent, I would take pictures and post them, but I’m not quite there yet. Plus, I borrowed some spoons from today to clean yesterday, so now it only looks like a moderate wind storm came through, so it wouldn’t really fully illustrate the typical appearance of our small, two room apartment. Here, how about an exaggerated visual of some poor soul’s living room… living room… living room?

Wow, that picture makes me feel some better. Anyway, the whole point of bringing up my slovenly apartment was that most days cleaning/organizing does not rank high on what I think is important in life. Living in an area where most people think that cleanliness is next to godliness can be hard. I’m not saying that it’s wrong if someone takes joy in having a clean and tidy home, but for me and my limited spoons, cleaning doesn’t rank high. I often feel like a bad person because I didn’t use up all my spoons so my house looks flawless.

I do have to mention though that I have an amazing husband who, if my spoons are depleted and I ask him to, will take care of things such as sweeping, cleaning off the table, cleaning the sink, etc. Actually, that’s not entirely true. He is even more amazing than that because the scene usually looks like this (let me paint you the picture of a recent real life situation which illustrates the amazingness of Gabriel):

10:00 pm Gabriel comes home from work and tells me that our landlord is coming over in the morning to look at the toilet which isn’t flushing properly. I, near tears, try to get up with a migraine to clean the bathroom. Gabriel takes the cleaning supplies and commands me to lie back down.

I don’t even have to ask him. Anyway, that was kind of a bunny trail, but I did want to give credit where credit is due.

All this to say that when you have a chronic illness (such as fibromyalgia), you learn what is truly important to you. I know now just how much people mean to me. I know I am out of spoons for the day when I have to decline spending time with people. I could say so much more about this topic, but I will leave that for another day. My fingers and hands have given up their spoons for the day. I guess I won’t be playing the piano tonight like I planned.