April 9, 2010

Be Assertive

Be Assertive.

That is my new mantra.

As I was afraid of, when I started opening up more to others about how I was feeling, my pain, and my frustrations, all I did was drive people away, and make them stressed out too… and it didn’t help me feel better at all. So I went back to the drawing board, and started thinking about things. I remember years ago, when I had lost a lot of weight, and I was down at my ideal weight, I felt really good. I thought I felt better because I was thin, but I think in actuality, I felt better because I had become assertive. That was one of the many things they taught me how to do in Weight Watchers. Weight Watchers is actually very interesting, as they use a lot of mental techniques that I really didn’t understand at the time, but that now make a lot of sense to me. For example, they talk about Mental Rehearsing, where you practice something in your mind before you actually go and do it. It really makes it a lot easier when you have prepared yourself. As far as being assertive, I had learned the techniques through things like asking for things to be prepared in a special way at a restaurant, or asking people not to make me feel like I had to eat a piece of their birthday cake.

That assertiveness is totally missing from me now, as is my weight loss, unfortunately. But it seems that those things go hand in hand.

I don’t want to let people mentally beat me up anymore. I’m tired enough from fighting pain and exhaustion all of the time, I really don’t need to let others hit me while I’m down. I’m not sure what started the snowball down the tunnel of poor self-esteem, but I’m tired of going down, being pushed down, whatever. I don’t want to analyze or be analyzed anymore. I just want to have a good life. I just want to do the best I can do with Fibro. I think the key to that is to be assertive. I really hope (arg, hope is not a strategy) want this to work for me. I’m tired of the way I am, and circling round and round solutions I don’t/can’t/won’t follow through with.

March 19, 2010


Things are not going well. I'm full of anger, frustration and stress. I'm depressed. I'm irritated. Everything is pissing me off. I just want to say 'fuck it' to everything.
You have this illness that amplifies pain. Then you need to pay more attention to the signs and signals your body sends, so that you know how to not overdo it. But because you are trying to listen to your body more, and be more in tune with yourself, the pain amplifies louder and louder. It's this horrible cycle that just gets worse and worse.
I can't tell if any of the medicines are doing anything. I just keep having more pain. But is it me being tuned into the pain more? Or is it really more pain?
I'm so exhausted. My job is extremely stressful right now. I can't relax. My legs hurt so badly. I'm so uncomfortable. I can't stand to lay in bed, and the ambien cr isn't putting me to sleep anymore.... probably because I hurt so much and my mind is going 900 miles an hour.
I'm so mad. I really just want everything to slow down to a crawl. I want to be able to manage things. I'm not able to do that right now, and things just get worse and worse. I hate living this way. I get nothing pleasurable out of life right now. Want to play video games? No, it hurts too much to sit in the chair at the computer. Want to walk my dog around the block? No, you can go about a third of the way, but then you get too tired, stiff and in pain to go any farther. Want to make love to your husband? No, that is incredibly painful. And forget doing anything else, like going shopping or taking a walk by the beach.
For fucks sake. Yesterday, I saw a guy on his hands and knees scrubbing the tiles on the base of a post, and I was jealous. Jealous of that??!?! Well, it's amazing the things that piss you off, when you literally cannot do them. I couldn't get down on my hands and knees, and if I did, I'd never be able to get up again. And forget trying to scrub something...
How am I supposed to live like this? How can I know my limits, but not focus so much on how my body feels to amplify the pain more?
How can I be happy taking a million pills a day? Pills that I don't think help? I am so dissatisfied. And I have become this whiny little bitch about it. If keep it in, it builds and builds and gets worse. If I let it out, I still feel horrible, but now everyone around me does too.
Someday I wanted to have a baby, but how can I ever get off of all these pills? And if I do, how can be well enough to carry the baby? How much will that hurt, or will it be a breeze, considering what I already go through daily?
I don't know if this post even makes any sense, but I just wanted to get it out.
I want to relax. I want to enjoy, have fun, and live life. I don't feel like I get to do those things, and I don't know how to make it happen. It's just spiraling out of control. Every time I think I'm at bottom, the floor falls out from underneath me. I'm tired of being told that I'll probably always feel this way, and to learn to live with it. I'm tired of having this "invisible disease" that makes it seem like it's all in my head. I mean, after all, I shouldn't be feeling pain. Nothing is wrong. So I guess it is all in my crazy fucked up head. At this point, I kinda just want to go into a catatonic state and sit in a mental hospital for the rest of my life. I don't want to die, but I am not living. This isn't living in an acceptable way.
Then in almost a sub-conscious rebellion, I sabatoge myself. I do things, or don't do things and I don't know why, other than it's the only few things I really have any control over. These things make no sense to me, like biting my nails or eating something unhealthy, or not eating something that is healthy. It's like I can't help it. I have to do those things because nothing else in my life seems up to me to decide. The thing is, in the past when I have tried to be strong, and make major life changes, they still didn't make me happy. Am I even capable of being happy? How do you "learn" to be happy and enjoy things? How do you let go of the seriousness? How do you get a happy medium? Something tells me I should stop analyzing and asking all of these questions, as a first step. Everyone else analyzes me though. I kind of just want to tell everyone to fuck off. I kind of want to just stop caring. I don't know if I'm capable of that. I want to get organized, but I'm so far behind... it's like everything is just so far out of reach, that it all seems impossible. I just feel like a complete failure. A failure down to the core processes of my body, a body tells me I'm in pain when I'm not. No wonder I'm depressed.
I have no valid plan. I don't know what to do. I don't want to be dependent on others, and I haven't been, so it's hard for me to convey that to others.... and then it's hard for those others to take me seriously when I'm not so convincing about what I can and can't do. I tried to push through. Tried pretending it didn't hurt. That doesn't work. It does hurt. A lot. I honestly don't know what I'm going to do now. I really don't want to keep plugging along the way things are now.
If I ask myself the question, what would make me happy? I don't know the answer. I haven't known for years. But fibro has make my quality of life go way down the tubes. I'm tired of testing and trying and not feeling better. I'm really tired of trying. Part of me just wants to wean off all the medicines I'm on and see what that does. Part of me just wants to force myself to do things no matter how painful they are. You know, those guided meditation things tell you to focus on your pain as a white ball of healing light... but my pain doesn't heal. My pain isn't for any real reason. My nerves are broken. My brain is broken. I just get all of the wrong signals that make me feel bad. I lost my faith many, many years ago. And now I've lost hope too. I feel like I'm being punished and there's nothing I can do to right whatever it is that I did wrong. I have to live like this for the rest of my life, and that makes me very, very sad.

February 18, 2010


Been wanting to try to do some blogging to track how I'm feeling, so decided to start doing it today. I want to keep a record of how I feel, what's going on, and the things I've been able to do each day. I want to have a better understanding of what I can handle in a day, and what's too much. I also want to have a record, so I can see how things are trending, and keep track of things that work, or don't.

I'm really pushing myself right now, so this will be short and sweet.

Vital Stats for today:

Pain: 7.5
Exhaustion: 6
Last Night's Sleep: 8, with Ambien CR and 1/2 Zanaflex
Frustration: 8
Anger: 7
Depression: 5
Fibro Fog: 5

Things I did today:
Slept in a little, went to the Rheumetologist. He took me off Tramadol, increased Vicodin, increased Lexapro. We'll keep trying to change things a little at a time, since things don't seem to be getting better.
Went to work.
Had a late afternoon coffee with my husband. That was really super nice to get to spend some extra time with him.
Went back to work. It's tiring and stressful. Left 10 minutes early.
Went to Walgreens to pick up a prescription, drop of the new increased-dosage prescriptions, and pick up a few other items. There was a long line, so I had to stand there for a while. That's never fun.
Came home and decided I needed to buck up and take a shower. It's amazing to me how tiring a shower is. I washed my hair too, which is even more exhausting.. something about the motion and the arms over the head... still didn't get around to the shaving part... one of these days... lol
Got out of the shower and started having a lot of muscle spasms and twitching in my arms and right side of my back. Took 1/2 a zanaflex. Didn't seem to do much.
Took the dog for a really short walk. My right hamstring really started acting up, so I had to turn back pretty quickly.
Wrote a blog entry :)


February 16, 2010

I'm A Cowardly Lion - I Need Courage

I wake up to the sound of my alarm. Shit. I hit the snooze button.
I wake up to the sound of my alarm. Shit. I hit the snooze button.
I wake up to the sound of my alarm. Shit. Was that three times? I can’t stall anymore. I have to get up. I have to go to work. I’m so exhausted. This sucks.
I roll out of bed. Try to stretch. Pain surges through my body. I look over at my husband and my doggie. They look so warm and comfy in the king sized bed with the soft flannel sheets and the down comforter. Bah. This sucks.
I stumble into the bathroom. Wow, I’m really having a lot of pain this morning. The warm surging ache that starts deep in my bones. The burning sensation in my face. The sharp stabbing pain in my shoulder, neck, back. The strained muscles in my hips and hamstrings. Fuck. I didn’t sleep well again. I’m worried that the Ambien CR is becoming less effective. What am I going to do if that stops working? This has been several nights in a row now. The dark circles under my eyes are really looking bad. I look exhausted. I feel worse.
I go through the motions. Medicine. Bathroom. Brush Teeth. Feed Fish. Get Dressed. Brush Hair. Put on Jewelry. Feed Dog. Kiss Husband Goodbye. Kiss Doggie Goodbye. I’m out the door in 20 minutes. God how I want to lay back down.
I drive to work, barely aware, barely awake. Just have to get there so I can take my pain meds. I think about how I’d like to go back to sleep. But really, it’s not as if I’d feel any better if I slept more.

In my heart and my mind I feel like I need to do something less stressful, with less authority, accountability and responsibility. For years, I have ached over being the breadwinner of our family. I never wanted that, and it’s a huge burden for me. Yet, I love my husband, and I support what he does. I want him to have the opportunity to keep after his dreams and goals. He’s made lots of strides, amazing advances, really, yet nothing pays off financially. It’s so difficult. He promises that things won’t always be like this, but I don’t honestly know how much longer I can continue on with what I am doing. It’s too much for me.

That’s the thing about Fibromyalgia. It seems like a lot of us who get it are these overachiever, do it all types. Then we get sick. It seems like I’ve gotten exponentially worse since I was diagnosed. There’s no magic cure, there’s nothing that anyone can say that will definitely help, and then everything I read and the things I am told by my different doctors all conflict with each other. Meanwhile, I stand by, wondering. If I do “x” will it help? If I do “y” will that help? I try to do the things the doctors suggest, but they tell me I have to come to many of these choices on my own. I know that I don’t want to work the job I’m doing any more. They have been pretty good to me here, but I really honestly do not believe I am capable of doing this type of work anymore. I am struggling. A ton. My brain nor my body can keep up. I’ve tried to relax. I’ve tried taking extra days off. I just honestly believe that I am no longer capable of doing this anymore, because of Fibromyalgia.

People really do not understand what being in constant pain for this long does to you. It expends all of my energy and soul, leaving me with very little left to put in to living life. It’s so tiring, and it builds and builds as the days go on. I’ve never been a very positive person, so trying to be super positive about life and about the situation just feels fake and contrived. I’m finding that it’s really hard to come to acceptance, mainly because it feels like others won’t allow me to do so. I truly think that I need to stop working this job. I have come to that conclusion. I tried to talk to my husband about that, and even about just cutting back my hours, and I don’t know if it’s financial or what, but he just doesn’t agree. I talked to my boss about working less hours, and he doesn’t agree. I know my problems go beyond just working less. And I do think that having some job or volunteer position and regularity is a good thing. But there is a point where it’s too intense. I feel cornered and trapped- a place I have spent a long, long time. I guess I don’t know if doing something different will help either, but that’s what I feel I should do. That’s what all my reading and research point me towards. My life isn’t going to change unless I actually make some changes to it. I’m tired of going through all this needless emotional torment. It’s my turn to be greedy and selfish, and be an asshole about getting what I want. That’s really hard. I say these things here in preparation for trying to actually do them.

Fibro sucks. It’s changed my life. I need to make changes in my life to coincide. It’s the old “but you don’t look sick” that makes it just that much tougher. If I was in a wheelchair, no one would expect me to run a mile. It almost hurts more because I’m not sure that people believe me. My husband said to me the other day- it’s all in your head that you are in pain, right? Well, I guess, yes and no. Pain is always all in your head. It’s your personal perception of feeling something. Am I injured and need to seek medical attention for a cut or a broken bone? No. (though I have failed to go to the doctor with a broken bone, gee, thank you fibro…) Am I in a hell of a lot of pain? Yes. I feel lots of pain. I am hypersensitive to it. And light and noises and temperature and touch. Some times something will bother me, and later it won’t, and later still, it will bother me again. I have problems sleeping. I have chronic fatigue. I have IBS. The list goes on. I feel shitty all of the time. I feel like everything is the tough road for me and my family, all through life. It could be worse, but I just don’t take comfort in that.

I really want to feel better. I really want to make some drastic changes. I feel like the cowardly lion- I just need the courage to do it. And the support.

January 31, 2010

Life is a journey, not a destination.

I've been trying to work out a new blog post. I've started and stopped a hundred times. Written, deleted... there's so much I want to say, but the words just aren't coming out right. It probably has something to do with how scrambled my brain is right now.

In a nutshell, I pushed ahead like I always do, and I thought I was in the acceptance stage of things with Fibro, but I have come to realize that is not true... boy is it not true. I am actually way back in step one- denial. I'm also feeling some of the later steps too- pain & guilt, anger & bargaining, and depression, reflection and loneliness. Sure, I have made some progress with things along the way, and I don't want to belittle that... but I have a very long way to go.

As usual, I tried to skip the journey and get right to the end.

I had this thought that if I stopped coming in to work on the weekends, and cut back to working only 9 1/2 hours a day, 5 days a week, that it would be enough, and that I would get well enough to go on with life. I've always been tough, and even though I consistently get knocked back, I forge ahead. I put the needs of others in front of myself- the people at work need me to do [insert five hundred million and one things here], and if I don't do it, who will? My husband needs me, I have to make money, I have to take care of the dog, I have to, I have to, I have to... but the blanks are never to "I have to for ME." I've known this about myself for years. At least I admit that it's a problem, but it is one I have yet to tackle.

For many years prior to Fibromyalgia, I have been stricken with random illnesses from unexplainable rashes, to IBS, to depression, to shingles, all of which my doctors told me were due to stress. I'd try to do a few little things, but I've never really tackled the problem. I'm not even sure how to do that? So when I got Fibro, and things got worse and worse, I just tried to make my little cut-backs, take a bunch of prescriptions and try my best to get in some walking. It is not working. Not one bit.

Aside from the symptoms not getting better, it is really intensely difficult to be in chronic pain all of the time. And to make matters worse, in yet another effort to not inconvenience others, I have bottled this all up inside. Until a few days ago, I don't think my husband even knew that I am in constant pain, 100% of the time, always. There are no times when it subsides. There are times when one part or another gets worse and better, but all day every day I hurt, and it never ever leaves my mind. That really is enough to drive a person mad.

Then comes along the anger. Why me? It's not fair. Why do I have to be the one to suffer? Why do I have to change my life? My expectations of myself? Everyone else's expectations of me? And how do I do that? How do I still feel accomplished and successful, when I can no longer even do the things that I wanted to do before? I mean, I didn't even feel accomplished then... how can I even feel good about myself now, when I have to do less? What happens when I ask for special treatment, and it turns out to not be enough? Where is the line that my job will no longer be able to keep me there?

My therapist told me that it is an experiment. We just have to keep trying until we find what works. Her suggestion is that I should only work four days a week, and less hours on those four days. That is extremely hard for me to accept, let alone ask for... or rather tell them that I need. When did I become this person who could never ask for the things I need? Why do I just want to take care of everone else but myself? But I digress... The horrible feeling in the pit of my stomach is then what if that's not enough? What if I can only do three days? Or none at all? I hate this. It really sucks.

I rescheduled my appointment with my Rheumatologist so that I could see him tomorrow instead of in a few weeks. I want to get his thoughts on this too, before I go talk to my boss about the change. Something tells me he will agree with my therapist, or maybe be even more drastic... One thing I'm thinking is that maybe I can try to do five days, but only 6 hours a day. I don't know how I will get my work done though. As it is, I work about 50 hours a week, and I can't get everything done. (as I proofread this, I see that herein lies the problem... I think I need to find a way to erase that thought of getting everything done, and find a different path. But again, I digress...) I'm wondering inside if I am going to have to try a different career, or at least working someplace that's less demanding. Where I work, the people are very much like myself, type A, overachievers... and I'm not sure if the lifestyle I need will fit in there. I guess all I can do is try.

It's really hard to know that I have to change. Drastically. I cannot continue on living the way I am right now. And to make it more difficult, I have to realize that I can't get there in the blink of an eye. There's a road I must travel; transporter beams are not real, nor realistic.

So I must now begin, putting one foot in front of the other, asking for and accepting the hands of others around me, as I go along my journey.

November 5, 2009

What is "Normal" anyway?

Howdy. Sorry I haven't written for a while. Things got pretty rocky and stressful here, but as they say, sometimes you have to hit the bottom before you can start climbing back up.

Between being in constant pain, not sleeping, not healing, being angry and frustrated and disliking my job- well I was just a train-wreck. So over the past few weeks, I've been working hard and separating out the pieces. While I haven't actually changed a lot of things, I have changed my attitude and my outlook. You have probably heard the phrases "attitude is everything" and "life is 10% what happens to you and 90% how you react to it." I used to think that kind of stuff was a load of you-know-what, but now I finally see what people meant with those phrases. I created the total downward spiral I went through all on my own. Sure, I didn't choose to get Fibromyalgia, I didn't choose to live life in pain, but I can choose what's next. I can choose how to live each day.

I admit, I am, by nature, a fairly negative person. I'm not one of those happy-go-luck people who always have a smile on their face and a skip in their step. And honestly, I don't want to be that kind of person either. What I do want to do is live my life. That's right- simple, plain as day. I want to live life. So the question is, how do you live life?

For a long time, I had it all wrong. I thought that living life was being perfect, and that if I could just be perfect, that then I could finally be happy and content. I just wanted everything to be normal. I often thought to myself that I could just get a week where everything was normal or even a few days... No problems at work, no pain, no frustration, just things would be normal and perfect and then I'd be good....

Well, I bet you can guess how well that worked out for me....

I began to take count of what I really wanted to do in life. I finally reasoned with myself that I should just do what I can, and that is good enough. I had to realize that I was the one who was putting all of the unrealistic expectations on myself. I am a pretty amazing person, and I was the only one who was holding myself to a bar so high in the sky that no-one could attain, let alone maintain a place there.

I have become my very own coach. I remind myself, quite often, of what is reasonable, what is realistic, what I can do, and what I cannot. I keep the thoughts going about moving at a reasonable pace, and that if I push and push, that nothing will be left to give- and that won't do anyone any good. I give myself time to breathe. I take nice long soaks in a hot tub. I think about all of the things that I did accomplish throughout the day. Mentally, I have accomplished so much, and I know how to keep going in the right direction, finally.

Yet one thing has still discouraged me: I am still in a lot of pain. Somewhere in my mind I thought that when I reduced my stress and got myself mentally in a good place that the pain would at least somewhat subside. Unfortunately that has not happened. In fact, the pain has persisted, and gotten worse (or at least it feels that way) since I was diagnosed back in May. I spoke with my therapist last night about this issue at length. She put a thought in my head that had not occurred to me before: Instead of feeling that I need to fight this and the pain will go away, it's time to accept it. It's not like Fibromyalgia is some disease where if you take the right medication it will be cured. This is a chronic syndrome, and it will be with me forever. So instead of going to the doctor over and over and wondering when I will feel normal again... it's time to manage this. Time to accept this is part of me. Time to live my life and know that I may never feel "normal" again, but that doesn't mean I can't feel good and it doesn't mean that I can't live. Things may be different than they were before Fibro, but so what. That's okay.

The work for me now begins on reminding myself and coaching myself of that. It's actually kind of nice knowing that 'acceptance' is the last in the stages of grief. I feel good about that. I think that once I stop focusing so much on wondering if I'll ever stop having a flare or if it'll get worse, that I honestly might feel better because I don't have to worry about it anymore. I've noticed that with many other things- once I'm not obsessing over them with worry, they really aren't such a problem after all. Funny how that happens...

In thinking about all this, I started really thinking about what "normal" meant anyway. How often could I even say that things were "normal" at any time of my life? What does that even mean? In reflection, I'm thinking that a state of flux, learning, growing, sadness, happiness, etc. IS in fact "normal." And quite frankly, probably a lot more interesting than a life of absolutely nothing happening. I don't really want to sit around in a catatonic state all day, after all.

What I'd really like to do is help others who are going through this as well. It's rough, and I understand what it's like when people try to give you the answers, but the answers don't seem like something that will work for you. I know what it feels like to put so much effort into trying to do what the others suggest, but you just don't know how to make it work. I know it might be the same coming from me as well, but what I can do is give you hope. It takes time, self-reflection, and desire. We all have bad days, but have faith. In as much to help any of you, I'm also writing this to remind myself to have faith when I have one of those bad days, too.

In closing, I'll leave you with a quote I recently read that I really liked:

"If you don't like something change it; if you can't change it, change the way you think about it." ~Mary Engelbreit

August 27, 2009

Rock Bottom. Help.

It's happened. I've hit rock bottom. I guess you have to hit it in order to move back up. I have to make some changes and fast.

I always liked this phrase: If you do what you always did, you'll get what you always got. And then there's the definition of insanity: doing the same thing over and over and expecting different results.

So the real question is, being as that I know those things, why do I live that way?

I had an appointment with my therapist last night. It's really hard to hear the truth. Especially when the truth is that I'm literally killing myself by trying so hard. She said I'm having that fight or flight response- and my body is fighting like hell and it's killing me. She said those words, many times. It's killing me. Then later, my husband sees me depressed and writhing in pain, and he says that it seems like my pain has increased a ton since I got diagnosed with Fibro, and then he asked if I thought maybe it was all in my head. I know he's just asking a question and not trying to be mean, but that really hurt. I could go on about all the reasons my stress has increased and my ability to manage it has decreased, but really, what's the point. I need to move forward.

So here's where I really need help. I need to figure out how to not over-invest myself in things, particularly work. I want to do a great job, but I need to stop feeling like I own the place and that all of the problems are my burden. The thing is, I'm the office manager. I've always felt that it was my responsibility to make sure we made money and that things ran smoothly. The bigger issue now is that we are in financial trouble. We are really down to skin and bones staff. I'm the only administrative person left. I answer phones, I do the mail, I call for collections, on top of all the things I'm supposed to be doing as manager; I do it all.

How does one separate themselves to not bleed the company's colors, yet still be a great employee? I truly feel lost at this. I cannot go on like I have been though. I'm going to get swallowed up from the stress. It's killing me. I wish I could figure out why I feel such great responsibility for this and yet I'm completely irresponsible when it comes to actually taking care of me.

If anyone has any ideas, or any websites I should look at or books to read... anything. I'm open to suggestion.

I cannot go on like this. I have to make a change. Now.