Monthly Archives: April 2013

There is a brain in here some where……..

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I know I was born with one……

I must have had one at some point…..

I am still catching up on sleep and today fibro fog hits…

Don’t say anything that needs to be processed…simple commands are really best at this point.

Drive to school.Pick up kid. Drive home. Start dinner, Walk the dogs. This is why I love my daily list. It seems silly….but some days it even takes me while to remember I HAVE a list.

Fibro fog can be challenging on its own. Its not just forgetting a word or phrase. Sometimes it can be dangerous. Did I take my pills? Or did I just think about taking my pills? Its not easily fixed because the next day it might not be my pills….it could be I forget to eat lunch, or put water in to make the coffee.Its thinking one thing but writing another, not a big deal you say, try doing that on a check! Its short term memory loss, Oh well why didn’t you tell me? Oh you did tell me? Really? Five minutes ago? NO WAY! Its trying to multitask by cooking dinner and standing two feet away doing dishes and burn dinner.  Its really hard to describe it to someone who doesn’t experience it. The closest you can come is the sleep deprivation of a new parent.

Sometimes I can predict when its going to happen. I haven’t slept enough, I am having higher than normal pain, or if I am doing something that requires alot of thinking. Those are good indicators that my cognitive abilities will be impaired.

Sometimes I am having a great day in all areas and out of no where the fog rolls in. Easily distracted doesn’t even cover it at that point. Its these days that I feel the most useless. I can litteraly stare off into space thinking of absolutely nothing for hours. It sounds like a nice break but really, there are things I should have been doing, things that really need to be done. It really does frustrate me in ways that no other symptom or problem I have does.

I read a bunch of articles on Fibro fog the past few days and I can totally see why some patients are scared they are now developing Alzhemeirs. It is scarily the same in many areas. It nice to hear that it is not something I am alone in. I helped care for a relative with Alzheimers and its not something I want to experience or something I want my family to deal with.

So I read, I arm myself with knowledge about it. I try to do at least one brain training activity  a day.  I write down as much as I can as often as I can so that I can keep things fresh. So that if I feel like I am loosing a memory or what not I can read it, look at a picture and keep it close.

Just like they don’t know why people have or develop Fibromyalgia. The Fibro fog aspect eludes them as well. They have all kinds of theories. They even give it a fancy name…they call it dyscognition.  The good news is they believe IN it now. Its not down to an exact science that they can do a lab test for it but they can do simple cognitive testing to decide how severe it is.

With them having made the “discovery”of something we already knew was real. They have some ideas on what causes it. Actual brain loss may be a cause, some researchers believe. Fibromyalgia patients showed 10 times the gray matter loss than those aging normally, according to a 2007 study by Montreal’s McGill Centre for Research on Pain. They also say there could be lack of oxygen and further neurological changes that are occurring.

There are all kinds of things that you can do to a certain extent to try and cut back on the amount you deal with. They will tell you get as much sleep as you can, exercise, stay hydrated, eat a low carb diet. Thats all good advice but telling a patient with Fibromyalgia to get more sleep doesn’t really help.  Its not the amount of sleep you need its the kind of sleep you need.  You need restorative sleep in order to have better cognitive abilities. Restorative sleep is often a very hard thing for fibromyalgia patients to achieve.I know I don’t get enough of it. Somethings that do help me are my lists, having a routine, and putting things away in the same exact spot. If I don’t hang my keys on the hook right by the door right when I walk in the door, I will spend at least fifteen minutes looking for them. Exercise is a great idea in theory. Its very hard for someone who’s muscles constantly hurt and ache to push themselves to exercise. Some days the only motivation I have for taking a walk is the dogs really really really need to go potty.  I understand the theory behind a low carb diet but for many patients with Fibromyalgia they deal with a certain level of depression and carbs help keep your serotonin levels up. I can do pretty good for a few days in a row but I NEED my carbs to keep me going.

There are days that no matter how much sleep I got, how balanced I ate, even walked the dogs a bit, I still loose my train of thought, transpose numbers and letter and a whole host of other things. Its probably the most annoying part of Fibromyalgia to me as I don’t feel as educated as I know I am. I get frustrated when its not even six pm and my brain can not even handle reading a book.

One thing that helps me in this area is I have a good sense of humor. I can laugh when I find my car keys in the refrigerator, or forget what I am doing and why I am doing it.  Most of the time I can adjust my schedule so that it doesn’t really matter. It wasn’t always like that and I look back and wonder how I ever did as much as I did. Two things come to mind. Caffeine and chocolate. Its a temporary fix I know. But sometimes you have to go with what works, what gets you through.

Sometimes you need to take a mental break…..

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I thought I would talk about my happy hunts a little. These are times that nothing is really working for me. Meditation this way helps me.

So sometimes when I am hunting for my happy, I go on mental picture hunts on google images. I put them in an order that seems logical and try to immerse  myself  in the pictures.

So this last time I decided I wanted a forest hike. I have such good memories from prior to my illness hiking parts of the Appalachian trails

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So here is the field we have to cross to get to the forest trail. As we walk through the knee high grass butterflies and grasshoppers move out of our way. Its clear and crisp outside in the early morning.The morning dew is still thick on the grass. The grass clings lovingly to our legs as we pass. There are some birds chirping quietly to themselves. It has that stillness that only first thing in the morning in the woods can bring.

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We start our hike here. The ground is a bit bumpy but it has a good mulch kind of feel to it. The crispness of the field is not as strong here….here its almost a wet fog feeling. Squirrels and lizards are scampering about sending the sounds of nails on bark and leaves being crushed under foot

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We have come to the part of the trail that  sun is just now hitting. The sunlight falls softly through the trees. It makes the leaves and grass look so much greener. So alive. The wet fog feeling is lifting and its turning into the perfect day for a hike. A level of contentment settles in.

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The path is taking us around a curve. There is a steep ravine on one side and we can see way down at the bottom a little trickle of water flowing.

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Here is a nice bench to just sit and relax and soak up the beauty around us. Listen to birds chirping and squirrels chattering and just take it all in. While we rest we have a protein bar and perhaps even a little gatorade.

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As we come around the winding path we start seeing the water that was trickling through the ravine has now branched out and is a good sized creek.

Soon we hear the trickling sounds of water over rocks. Its a special music all its own. Soothing. Peaceful.

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The sound evens back out and the sound of water moving is a gentle background noise….gurgling and rippling here and there as we walk.

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The water is really spreading out now. We are now walking along a boardwalk like path. As we round the last curve we are greeted by a glorious vision of beauty.

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Here we will camp for the night and hike back in the morning. Soon the stars will be coming out and we will have even more wondrous things to look at and enjoy.

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This doesn’t always bring me all the way back to Happy. Sometimes I am just better. Sometimes I reach a better level of contentment. But it never fails to help center me and give me the motivation I need to go on. I could sit here and be angry and upset that I can’t go on that kind of hike anymore…or I could just immerse myself this way and also be content with the short maybe one hour hikes we go on. To enjoy the little moments while I am there.

HUNT FOR YOUR HAPPY!

Change changes change

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You would think that with the constantly changing types of pain we have….that change wouldn’t be a big deal

We moved almost five months ago…..as we left the house we lived in for thirteen years…I wondered how I would ever look at the new place as home… How would anything else become my sanctuary the way my house had in the last two years we lived there.  I like change. I don’t like when things are always the same. At the same time I also like routine. I’m odd like that.

.I realized within weeks of moving It had
Indeed become home. My bedroom is still my sanctuary and really not much changed other than housing. I still miss our house….but its already a dull ache and the chaos as things breaking almost daily the last few months doesn’t seem like it was THAT bad.

I think we get caught up in that typically when our symptoms change something has gotten worse. So we start to associate all change as being bad. Most of the time this comes under the didn’t know it was coming change. When we institute a change it tends to have a different  meaning. We wanted it to change. We were ready for it to change. Perhaps the didn’t know it was coming change can fall under that category as well if we just let it. For me that is the challenging part.

Most of us say we are open to change but when you suggest how to change it, most of us say uh uh no way. Just think if the caterpillar took that thought process. I am not changing I am gonna stay a caterpillar. I know how to be a caterpillar. I know what to look out for, what to do and what not to do.I don’t know what will happen once I go into that cocoon. If the caterpillar thought that it would never get to experience flying.  It is one animal that literally changes. Not only its size but also its mode of transportation as well. Crawling was okay for the caterpillar but Flying is what it was MEANT for.  I mean have you ever seen something enjoy flying as much as a butterfly seems to? Can you watch a butterfly fly about and NOT smile?

I have been trying to look at changes differently. To look at them as helpful and not hurtful. To try and glean the lesson from them and to learn from them. My OCD brain says no I must have it this way. It must go this way. This is the way it needs to go. While the other more rational side of me says, well maybe this way IS better. Its a constant battle some days. I can easily talk myself in circles some days. Heck I can make myself walk in circles this way too.

I like this quote from Mary Engelbriet. “If you don’t like something change it; if you can’t change it, change the way you think about it.”

It really is quite helpful to me to think this….Can I change it? yes okay. If not, then how can I see this as a good thing?  Going back to moving …we are now closer to our daughters school. So much so that we can walk her to school. I can walk to pick her up. This could be a very good change. On the rare day that both my husband and I are home we try to walk and pick her up together. Alot of the times we take the dogs. We are doing something constructive but also getting some quality time together as a couple and as a family.  There are other things like now I also have someone else who can cook dinner, help keep up the house and other little things like that.  It all depends on how I look at it. Or how good the food is, which is probably pretty good because I know I don’t cook very well.

I used to think that not changing how I believed meant I was firm in what I did believe in. If I really held on to that, then I would have ruined alot of things that have been good for me.  Sometimes we take a bit too much comfort in not changing. If we accept something that we once thought was not true because the proof of it is in our face, we have changed for the better. Of course that is just my opinion. It has been said that those who adapt survive. Well I want to not only survive but also thrive! IF that means I have to change the way I view something then thats what I am going to do. Its not like snapping my fingers. Its hard. Especially if it is something you grew up believing and now you don’t. It was easier then, I didn’t have all the information. In this way ignorance was bliss. Its a struggle some days to remain  on course, to making the changes I want. While also dealing with the changes life throws at me.

I think whats hardest for me to grasp is …..its okay to want things to stay the same, to stay safe, to stay in the known.  Its okay to acknowledge that change is hard. AS long as I keep in mind that I am changing little by little. I am adapting and Dammit I am not only going to survive these changes I am going TO THRIVE too!

Find your Happy even when its hard.

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Its hard to do.

Its hard to make choices that exclude certain things or people from your life. I know. I have done it.

Its what was best for us.I had to start looking at my emotional health as an integral part of my overall health and when I did. I realized alot of my flares and pain were during or right after some really intense…shall we say drama.  I don’t like it.     I wish it was different.

However when I look back at how stressed my life was and how less stressed it is now….it was the right choice. Sometimes I think maybe things have changed and I peek back, it hasn’t. Those peeks back have often brought all kinds of other pains with them too. They are people who made a difference in my life but what I have going on right now does not fit with them.  Its painful to realize that. For years I realized I needed to cut back some of the drama and emergencies that were going on. I talked about it, I planned it out, I thought about it. I didn’t do it. It really was like one day a rope broke and that was it. I knew I was breaking the connection. I was done.  The straw that broke the camels back and all that.

When you have so many things that can weigh you down you have to weed out what you can.  Its never an easy process. In fact both times I have done this there were multiple nights of crying myself to sleep and riding emotional rollercoasters daily. I didn’t even attempt alot of this until after four years of therapy. When I suddenly realized I did an awful lot of talking about focusing only on the positive but not getting rid of the negative.

I can forgive the people who have pulled me down, but I don’t have to let them back in. I have the right to insulate and protect my happy. Sometimes its hard to remember this. Its hard for the people you are leaving behind to understand this,especially when its family. This is one of those times that you have to do whats right for you and no one else.

I used to also listen to the news like almost two hours a day hearing news pour in. I am picky about what kind of music my daughter listens to and to tell the truth we are more likely to listen to instrumental music or blast 70’s and 80’s rock than anything else. It adds weights to you. Each news piece about something horrendous is like a little gravel stone being added. The little stone in and of its self is so tiny, barely weighs anything at all. Even small stones and pebbles can become heavy if there are enough of them. Now when i do listen or watch the news its more of a this is what generally happened today. Except for Tuesday. Tuesday I listened, I watched, I cried. Even though those people that were hurt in the Boston Marathon Bombs were heavy in my heart. I turned it off and searched for the happy. It wasn’t easy. But by finding my happy and sharing it I made others a little happier. Thats what matters. Raising others up, either by a gesture or a hand of help or even just a inspiring image. We make each other stronger.

Everything is not sunshine and roses and rainbows and sprinkles, but it is better.  Its been a painfully slow process.  This is where it is helpful to look back at what was going on in your life and how things have changed. How far you have come. Its amazing sometimes to me how far I have come.  For me the key was to not look at the future but to say this is how far I have come and I am making progress. I keep that ideal image in my head. Maybe one day I will get there. Maybe not. I recently heard a new take on something I had not thought of. Happily ever after means the story is over. The trials are done. The journey is at an end. So I am okay with being in the middle of my story. My story is not at the end. I do hope that when I get to the end its been a happily ever after story. I am good with just Happy.

Sometimes Finding my happy is a daily challenge, an hourly challenge, a minute by minute challenge. Something that helped me was realizing that my happy changes. Somedays its the cats antics, somedays its the dogs love of chasing squirels and the look of pure joy on their faces while they do. Some days its sitting outside with the dogs reading while my daughter plays. Sometimes I have to go on a Happy Hunt, looking for it. Other times it just hits me. Taking the time to find out what it is for you is worth it. You deserve it. Don’t let anyone else take it away from you.

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I like to think of it as a butterfly. Always just ahead of me but trailing enough happiness glitter behind that I enjoy the chase. Catching it and marveling at its beauty and then let it stay awhile on my finger. On my shoulder.While its around the happiness glitter accumulates around me. Then the satisfied feeling of having caught it overwhelms me and it is off and flying again and I am off and chasing it again.

Don’t be jealous of my gloriously life!

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Not just anyone can do this.

Not just anyone can rule the house but still be in bed.

Not just anyone drags themselves past their limits and then keeps going even further.

Not just anyone will allow snuggling knowing it is going to hurt and that the hurt is intentional.

Not just anyone can be chronic ally sick.

But time and time again when I talk with other parents who are walking similar lives as me. I am continually amazed at how we ROCK this life.

Now granite it takes a while to get to this point and I really never thought I would. I never thought I would get up after tossing and turning most of the night, and say oh its going to be a pills and caffeine day okay got it. I can handle this.

There were times though that I didn’t think I could do it. There were times I was sure I couldn’t do it.

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So its been two years since I was laid off from a job I really loved. In four months it will be two years since I filed for SSDI.

When people find out that I stay at home due to chronic pain and illness, there responses vary.  Some people say good for you! Thats great!  Some people say wow you are so lucky.Some people say you gotta do what you gotta do for you.  Some people keep their thoughts to themselves….I think I like those people the best.

This life is not easy. This life is not a choice.

Perhaps it is because I have always enjoyed a challenge and really this is the biggest challenge I have ever faced.  It is a daily challenge. Its a daily different challenge.

The other day a woman told me I was so lucky I got to stay home and she was so jealous.

Jealous…… of me? Whatever for?

Jealous of the time I spend in bed unable to participate in activities? Jealous of the time I spend in the bathroom unable to leave? Jealous of the pain that prevents me some days of doing much walking?

Its taken me days to wrap my head around this. I couldn’t figure out what there was to be jealous of.

Then it dawned on me. I do have a pretty glorious life. First of all I am alive, even if I am in  pain.  Second of all, I take life a bit more seriously and try to stay in the present more and more.  Thirdly once I started trying to stay in the present more, I realized I had friends I would never have had without this chronic illness and pain.

Alive what does that even mean?  The Merrium-Webster Dictionary says its an adjective. Its having life, not dead or inanimate. Well there are times I feel inanimate but the very action of breathing makes me animate doesn’t it. Hmm..Okay the second one says still in existence, force or operation.  I like this one…this one makes me smile and say Yeah I am aren’t I. It also has a second part, which states:Still active in competition with a chance for victory.  I really like that one. Because I like competition. I guess that goes back to my love of a challenge. Some days I feel like I am still striving for victory others days not so much, But as long as I am still active in competition then I am still alive.

Staying present is not very easy. Its something that you have to keep reminding yourself to do. Being a parent has a very strange way of doing that all in its own. I have found when I don’t do this, this is when depression starts. I have no illusions, I know I walk a fine line with depression. Its always there just around the corner. If I focus just a little too hard on what I can’t do, its there. So instead I try to find the happy in everything. The miracle of new life in the woodpeckers right outside my window even if they are awfully annoying at six am.  The wonderful sound of my daughter laughing at the squirrels antics to annoy the dogs.  The wonderful smell of a crock pot cooking dinner all day.  Sometimes its even just taking enjoyment of the taste of junk food. Staying present in the moment is a challenge… Did I mention I love a good challenge? And its definitely a good challenge. It enriches my life in ways I never would have seen before.

I know I have brought it up before about friends. The friends I have now are not the ones I thought would still be here. Really the friends I have now are nothing short of amazing.  They have seen me at my worst and still love me.  To me that is nothing short of amazing. This was one lesson that caught me off guard when I first got sick. I didn’t expect people to abandon me. I know the few people I have let get close again are stuck to me like glue. Just like I am to them.

So yeah I guess this is a very glorious life I live. Its something I need to remember a bit more. To not let small comments take me off guard so much.

Anxiety is an awful burden………….and a unique pleasure.

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Today’s writing prompt is Decisions, Decisions. Here is what that brought tumbling out of my brain today.

The burden of over-thinking things. Sometimes it sits very heavy on my shoulders. Tonight scrutinizing my child’s report card, knowing that she is probably going to be retained to second grade. Wanting to make sure that I am doing everything I can to see her succeed. To not take a retention as a failure on my part, To remind myself she is not me. To see it in a positive light.To remember this is where there is benefit in her being in a montessori school.Grade levels are not as defined as in public schools. Its not like her report card is horrid. Its mostly A’s and B’s a few C’s but with the FCAT looming………..I have to remind myself she will be more confident with another year under her belt. I know my child, I know she will excel the best this way. But that nagging thought that nagging voice that won’t stop.

Sometimes anxiety is so paralytic that I need someone who is thinking straight to step in and say why don’t you do this then that? Someone who can see the big picture while I am looking at the details, and visa versa. Its taken me awhile to find friends that are capable of this. As I relate most to people who are exactly like me. To see their differrences as a benefit not only to me but my child as well. To see that we have learned and grown and become better from these differences. That they all started from one decision. To reach out . To change. To be who I wanted to be inside and out.

For me its rarely a quick thing to make a decision. Its back and forth and up and down and then perhaps we are ready. This is where my ocd comes in and can get truly annoying. Really it does. It annoys me that I do this. I set up the pantry.It works it functions. No it does not work It needs to be this way. it works it functions. No I like it better this way. I am constantly rearranging and redoing and rethinking. I rarely do something and leave it alone. I believe the saying if its not broken don’t fix it. But then that little OCD voice says but perhaps it would function better this way.

I am great at starting things, not always so great at finishing things. I have great intentions but the follow through is lacking. This has haunted me all my life. I struggle against it.I hate this part. I want to follow through. I want to I really do. People will tell me if you want to , you will. Sorry, not with a brain that is all over the place constantly. 

It doesn’t help that as I have gone along in life , there have been things that have made anxiety even harder. Sleep deprivation, chronic pain, oh and having a kid!

When i really sit down and think about these things I realize no I have not failed my daughter. I have made mistakes and thats okay. It happens. We move on. Its the moving on thats important. Its the moving on that anxiety does not like. 

I fight a battle every day to keep my anxiety back. To go forward even though it is hard and the fear can be overwhelming. This has actually helped me in other ways. To make changes to keep trying and to not stop. 

Anxiety is okay, Anxiety can be helpful. Taking time to self reflect and check in with yourself is okay. Its good. 

Anxiety has made me a better parent. I am continually striving to be better, to do better, and that can only help. It has caused me to realize taking the time to make sure I am okay helps me make sure she is okay. Not only is it making sure she is okay but its also teaching her to   make sure she takes time for her as well. Teaching her that self care is just as important as caring for others. 

I am a happy person in general and I know I hide my anxiety well.  I relate to both Tigger and Eeyore. I like to be happy and cheery and boucny and fun but I also really like my deep dark storm clouds of thought. I think often that is when I make the best decisions. 

Today I felt a need to write but couldn’t pin point what I wanted to write. There was a writing prompt today of decisions decisions.  Well there are multiple times a day where I want more decisions. More decisions than even others think are necessary. Then there are times in that very same day where I am tired of making decisions. I don’t want to make any more. 

Its such a unique feeling to know that you are doing the right things, taking the right steps to get to where you want to be. Yet there is still that little voice that says nope you are wrong, this is wrong you are not doing this right. Its hard to remember to tell that little voice that there is not always a clear right or clear wrong way to do something. Sometimes there is just doing. 

I am just me.

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What does chronic pain look like? What does chronic illness look like? Why should we have to LOOK like anything to get any kind of support? Some days my limp is really noticeable. Some days its not there at all. Is this who I am?  So who am I really?

I am not my illness that is for sure. I am not the girl that limps. I am not just a mother. I am not just a wife. What and who we are is so complex. Some days its hard to see past the limp. Some days its hard to see pass the overwhelming panic attacks. Some days when the depression from all that we deal with is so overwhelming its easy to see only what is wrong. It is easy to say there is nothing positive.Its easy to see only the dark.

The truth is when you have chronic illnesses you have to search for the positive. You have to hunt for it constantly. If I don’t try to see at least one positive thing each day I get overwhelmed. Sometimes I find silly positive things. Like if I hadn’t run out of gas in the grocery store parking lot I would not have remembered I forgot zucchini. Sometimes more deep positives are to be found, like how lucky I am to be a mom to begin with.

Its a hard thing to do to self reflect almost every day. Its something I have to do. Its like a daily check in. Am I doing what I need to be doing? Its so easy to get swept up into everything that is going on. Its so easy between running errands and picking up kids and cooking dinner to just go with the flow. Setting aside me time is so very important.

I realized this yesterday when I was so wrapped up in what was going on the past two days that I was in anxiety overload an so completely frazzled. It took a friend pointing it out to me. I had not realized how wrapped up in it all that I was. Twenty minutes talking and laughing and I was on my way to being refreshed.

Its the thing I struggle with the most. Taking time out of the day just for me. The more my chronic illnesses flare, the more I need it. It is so hard to just allow myself to relax. To allow my body to catch up. I struggle with what I can get done now compared to what I used to get done before. I have to continually remind myself …Its okay. Its okay. Its okay. I am just me. This is who I am now. Lets not look back at what we were…Thats in the past…Lets focus on now…Who we are now. Sometimes who I am today is not who I was yesterday.

Its been a two year process to get to this point. To know that I need to feed my mind intellectually daily, that I typically need to clean or organize something daily and that I also need to escape into sci fi fantasty daily as well. Its easier to do now that I am not working. However its also harder. Its harder to remember to feed my brain intellectually daily as its something I have to stop and do. Sometimes it happens helping the kid with homework. SOmetimes it happens with her questions. I don’t know but we can find out.  Sometimes with having NPR on in the car I get it in the little snippets I do hear. Right now my main intellectual feed is reading the basics of Zen.

If I ignore my OCD. It explodes and then I flare and I am not better off this way. I know this. Do I always practice this? NO! Should I? YES! Again this is a time I have to say. Its okay. lets just fix it from here.  Monday I organzied my daughters clothing drawers. Tuesday I took everything off the kitchen counter and lysoled it and bleached it. Wednesday I didn’t do anything. Today….everything is bothering me. The kitchen table is probably what I will attack or maybe it will be my dresser and my clothes ….most likely it will be both. I know this. I will probably fight it. My head is constantly full of these kinds of battles. With my body chirping in to say…Dude this chair is sooooo comfy though. My OCD has really taken more of a backseat out of necessity. I can’t physically do all the cleaning I was doing. Or the checking. I have now developed “mess quotients” I can handle the house getting this dirty and then it must be fixed. This has helped me come off a flare instead of aggrivating it. It wasn’t easy. It took many times of just pushing through the flare and cleaning anyway and be unable to clean for weeks on end because of pain.

There have been alot of things lately that have been kind of ahh ha moments for me. Things others have said that didn’t click until recently and I was like…Ahh ha thats what they meant. Recently after one such ah ha moment I picked up my Zen book. Removed the bookmark and here is this quote staring me in the face.

” Teachers open the door, but you must enter by yourself.” Chinese proverb.

Yes! If I hadn’t had those people say what they said. My mind would not have been “opened” to that idea. When it clicked I had entered by myself. It was a very powerful moment and one that I said I am going to be more true to myself. To who I am. I am not my illnesses. They do not define me. I am just me. Just me is pretty wonderful. Just me has been able to change and adapt to each new circumstance. Just me hasn’t gotten lost in chronic pain or illness, or well never for too long. Just me has realized that change doesn’t mean I have lost myself. All in all just me is pretty wonderful

Fatigue is such an inadequate word.

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I really wish there was a better word. When people here fatigue they think oh just a little sleep will set you right. WRONG.

Its not just being tired. Its not getting restful restorative sleep. I have learned so much about sleep since getting sick. Sleep is not sleep. There are different types of sleep. All I know is I just want to sleep.

So how to describe to someone the feeling Chronic Fatigue and Fibromyalgia together create? Its a very challenging thing to do. Not only is my brain tired. My muscles are tired and my eyes are tired and my bones are tired and my joints are tired. They don’t want to do any kind of movement at all. Which might be okay if it started around six or seven pm. When this is how you wake up….its a different story.

Ever since I was a kid I have read to get to sleep. So when I wake up in the middle of the night. Its not just a matter of reading to get back to sleep. Most of the time I have no cognitive ability to read. I typically play a game on my phone or scroll through facebook. That is if I actually get out of bed. I have a rule that if I am awake longer than fifteen minutes I get up. I used to think I was waking up out of hunger. I gained a lot of weight with that. Sometimes though its the only thing that helps. I have switched to a high protein high fiber cereal and that helps even more.

Some people have called me lazy. I am young I must be able to just pop right up. Yeah about that pop right up…..This body says you are funny! There is no popping. I struggled for a along time thinking I was actually being lazy. Can it be laziness when it actually is hard to force pass the all over muscle tiredness that is always there?

There are four levels of sleep. We all cycle through them each time we sleep. Its not til the third and fourth level that we get restorative sleep. For people who have Chronic Fatigue and or Fibromyalgia this is a very difficult to achieve. Most people don’t reach these levels of their sleep cycle until ninty minutes after falling asleep. So with me waking every two hours. I don’t spend alot of time in that glory area! The longer you sleep the longer the third and fourth level last starting at ten minutes or so and increasing to up to an hour. Kinda hard to get to longer levels of the deeper sleep when you are constantly starting your sleep cycle over.

There are lots of ways to help people achieve this third and fourth level of sleep. Its called REM sleep or also delta wave sleep. I have found meditations and recordings that will help you get to the delta wave faster. They work some of the time. Sometimes when I am tossing and turning alot these meditations can help calm that. Sometimes but not always.

I also use melatonin. It at least gets me that sleepy feeling so I can actually fall asleep. I have tried the extended release as well but was not very impressed. Being on antidepressants Melatonin is one of the few things I can safely take. I also take a magnesium calcium combo to help me sleep.Basically I take enough medications and supplements in the evening that could knock out a horse but make me just a tad sleepy.

I do find this time that I am awake in the middle of the night peaceful. I think that is probably some of the reason I do it. The animals are quiet the kid is quiet the husband is quiet. I can hear myself think. If I want to think that is. Sometimes I wake up and am so AWAKE that my brain starts up. Those nights I know it will be hard to get back to sleep. These nights I should not even try to go back to sleep, but I always do. I always feel worse when I wake up.

How to describe a feeling of immense fatigue? That you feel daily that you are being weighed down by cement while also walking through molasses. A feeling that never really truly goes away. A little cob webby feeling of it is always there. That no matter how often you are resting or sleeping it never goes away. Im not sure that you can. I think its just something you have to experience. I also don’t think I can explain HOW I do the things I do….I just do. I don’t think about it I just do it. I might whine and complain and bitch and vent but  I do it. How does a mother push a baby out? She just does. She doesn’t give up. She keeps going….even when she is sure she can’t stand another second of pain.  How do I function on three sometimes four hours of sleep? I don’t know. Plain and simple. I don’t know. I just do it because the way I see it. I have no other choice. The other choice is too much like giving up. I won’t quit. I won’t give up. So I just go on.

So what happened to my fairy tale?

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It really was coming along so nicely…It had a great start. Even a bit of drama thrown in. I met my husband in 1998.  Three weeks later he was on life support and in a coma for four days. A very miraculous recovery he walked out of the hospital two weeks later. We got married in 2000. We had a midevil theme of castles and knights in shining armor.

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We found a house. We started to settle down. We had some major bumps with infertility and miscarriage. Then the sun came back out and we had our daughter in 2005. Soon after this….the way I pictured things and the way things turned out started to differ. I am pretty sure this is where alot of the anger I had in the beginning of my illness.

It took me so long to realize I was missing things by being so very angry.This anger was boiling under the surface but when someone asked me why I was so angry I said I wasn’t. It was a form of denial. I see that now. I didn’t then. I was in therapy. It was helping but the anger really wasn’t going away mostly because I wouldn’t acknowledge it was there. That low simmering anger that this is not how it was suppose to go. I was suppose to be having fun. I was in my twenties. I had a husband a beautiful kid. Where did that contentment go that I had?  Why couldn’t anyone else see how EVERYTHING effected ME.

It wasn’t til after four years of therapy that I started to understand. There were other people being affected by this than me. Maybe it wasn’t all about me after all. Maybe I needed to be laid off to get some perspective. Two months later I got a job. I was confident I could do it. Even the new boss had an aunt with Fibroymalgia. He would get it.

I gave my everything and perhaps if I had not had so many medical issues that were weighing me down it would have worked out. Three months later, I realized my health couldn’t keep up with this pace. A week after I turned in my two weeks notice there was a decision to either stay at work and fail to meet a family obligation or walk out. I walked out.

I am not sure why five months later I was suddenly ready. Why I didn’t see it as giving up then when I did three months prior. I filed for Social Security Disability the next day.

Almost two years being a stay at home mom and more therapy has given me a different perspective.

Would I really have appreciated everything I do have if I hadn’t had to work so hard to get it? Would I really have realized how quickly time does fly and being a parent who was there was the MOST important thing? I really don’t think I would have. I was content. I am content now but they are different. I want more now. I want so much more. It was hard realizing I could be content with what my life is now but still want more. It may take me longer but I will get there. I will get there and I will try not to ignore what is going on around me right now. Because that is some truly wonderful stuff as well.Family

I wouldn’t wish this life on anyone. If anyone had asked me what I had planned for my life fifteen years ago it would be very different from what I have now. I think that its a failing in society that we paint things in this rose tinted view. Everything is wonderful having a job is wonderful, being married is wonderful , having a kid is wonderful. It all ends happily ever after. This took me completely by surprise. What do you mean this is what having a job is? This isn’t fun! This isn’t wonderful! Parts of it yes but not all of it. What do you mean its not all lovey dovey and kissey kissey in marriage? What do you mean we won’t always see things the same way? Lets just leave the kid part as obvious.

I have started focusing more on the beginnings of things and maybe a little of the middle of the story.To not only let myself know that it was okay when things went wrong but to let my daughter know it was okay. Its not always going to go right.  It took me along time to realize happily ever after meant it was over. The story was done. My story is far from over. I know I felt like it was when I was less and less able to do the things I love.

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Slowly I am reconstructing my fairy tale. I am not my illness. I am me. I am the same person only made better. Made more aware.

Not all species in this world can derive as much wonder out of life as we humans do. Sometimes when I get really side tracted by all the other stuff. I go outside and just sit. The world is moving on. The animals and insects and tress they are all just going on doing there thing. They are so super buzy pollenating and surviving. The birds are not sititng in the tree’s waiting for the worms to crawl up the tree to them. So why had I been content to let life come to me? Mainly because thats what happens in most fairy tales I had read.

I am glad to see more and more stories telling more and more of the realities of the world. Not only for the kids to realize it but also sometimes its a good reminder for us as well. It gives us hope and something to think about when times are tough. We watched Rise of the Guardians the other night. The thing that stuck with me the most is……Whats your center?  That thing that drives you. Its so easy to loose sometimes.

It would be nice if a nice rich prince came and swept us off our feet and we had mice who scurried around and got the message to people. Little animals would come in and clean house with us or for us. We would always triumph over the evil. We would always see the inner beauty of everyone we meet. We would immediately rise to the occasion. We would always have someone looking out for us and who would ride in and save the day when we needed it. That anyone who did us wrong would be served their karma while we were near by and could see it.

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My life may not be fairy tale perfect but parts of it have fairy tale moments and those are what we have to hold on to when its hard to hope.

If I hadn’t been what I have been through I wouldn’t have the friends I have now. The ones that help me get through the high pain days or the high anxiety days or the parenting woes. They give me hope in ways they aren’t always aware of.

At church we sing this song. Come sing a song with me,that I might know your mind, And I will give you hope when hope is hard to find, and a rose in the winter time. There are two other verses. Come Dream a dream with me and Come walk in rain with me. (Carolyn Mcdade 1976) I like the first and the last the best. They truly help me remember that even in that bad times and the hard times that there is a song to find and a beauty to be found.

A birthday party and chronic pain….A day in the life of a chronic pain parent

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So today was the BIG party. My best friend has three daughters whose birthdays are all within a thirty day span. So it was a big birthday party festival.

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Not many people realize what goes into this kind of active day when there is also chronic pain. Not many people would understand that I HAD to rest this morning. What seems like a good idea to others, really isn’t. I had stuff to do around the house, dishes, laundy, sweeping.  Someone without chronic illnesses does not realize how energy draining these tasks can be. Its just part of their day.

I had gone to bed early the night before. I knew I had to stay in bed as long as possible before the party as well.. I had told her I would come over to help decorate. This woman is one of my friends that just gets it. She has seen me at my worst. She has seen me at my best. She has also yelled at me what did I think I was doing! Sit down this very second I got this! She has saved me from many flares and helped when I flared anyway.

I did a small load of dishes before leaving. Did not even stand there ten minutes. I know fifteen minutes is my max! we grabbed the presents and realized we were now missing some as they wondered off into the kid’s room. All by themselves! Imagine if we had gotten that on video! So quick trip to the dollar store. Then we get to her house. I medicate myself mainly with supplements and over the counter pain meds. We get started. Stuff the pinata…check, make goody bags…check, Blow up balloons…..Okay I really didn’t do this as unlike popular opinion I am not full of hot air. It was really pathetic. So Tape up streamers and attach balloons. Check…Rest, Relax, party will start soon.

I am pretty much exhausted at this point and just glad to have a cola and that the kids are all playing contentedly. I can relax a bit while I get caffeinated back up. At this late in the day I am typically on water only but its a party. I am gonna need it.

The guest arrive there is lots of talking lots of grazing on fruits and veggies and my favorite…Spinach dip! I even had a beer. It was nice to talk with other parents. There was little need for adults to intervene with the kids.

What the others don’t see is my joints are starting to stiffen up and even protest over movement. What the others don’t see is I am more and more gritting my teeth in pain. What the others don’t see is the huge weight of fatigue that has settled around me.

We carry on. We get so used to it we don’t even acknowledge it most of the time. We have sandwhiches and presents and cake! Time for the pinata. Oooohh a totsie roll? Don’t mind if I do. Hey I will take my sugar rush where I can get it at this point. Its now nearing five pm and its starting to show on the kids. We are starting to have meltdowns. We are starting to have heads run into noses. Time to wrap it up.Pull myself up out of whatever chair I have landed in this time. I help a bit throwing sodas in the recycle bin. My friend shoves some extra cake in a tinfoil wrap to me.  Five minute leaving warnings are issued,which we all know is more like twenty minutes with all us parents talking.. Just so you don’t think I would ever approve of drinking and driving its been two hours since the last of my beer. We finally leave its near six pm now.

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Luckily I live about three miles from my friend. Its a short ride and its automatic and on back quiet roads. We get home. One hyper kid one exhausted and in lots of pain mommy and one daddy who is probably as exhausted.

Showers are a great way for our family to transition into bed. No dinner tonight. All that munching on fruits and veggies and juice boxes and Cake….No way. Get the kid in the shower. I take meds and hope they kick in quickly tonight. Pj’s and brushing teeth and hugs and kisses and last minute stories that simply must be told before bed. Its now close to seven fourty five and this mamma is running on fumes.

I take my melatonin and crawl under the covers…..only..to have to pee.. Of course! Pulling my acheing screaming whining body out of bed I go to the bathroom and as I shuffle back to bed. I realize.I will hurt tomorrow. My muscles are letting me know that right now! Don’t have to guess about that one. What seemed like and appeared like a simple thing of getting up on a step stool and attaching streamers. My thighs and hips and knees are letting me know was no simple task for them.

At the end of the day though my thought is only that….its worth it. To help a friend….its worth it….for a fun and exciting party for the kid to enjoy.

I bet if you asked any of the other parents there if they knew I was in pain or uncomfortable they would say no. Its not something I advertize. Its just a part of me.  Before you jump to judge a parent for not jumping up the minute her kid screams. Think. Maybe that parent can’t get up quickly. Maybe that parent knows that a friend who is with her will be quicker. But don’t you dare for a minute think those screams or cries from their kid doesn’t pull on their heart strings in more ways than one. That it kills them that their joints don’t allow for a quick stand up from sitting. That it kills them they can’t be there right away to be the first to soothe the hurt away.

I don’t write this to make anyone feel bad. I don’t write it for sympathy either. This is just a quick glimpse of what other parents deal with. Its not even all the thoughts that I had that day. Take it as you will but this is my life. I am good with it now. I wasn’t always and at times I still struggle with it. Its not always easy but its always worth it.