To Work or Not To Work with Fibromyalgia

Having a career with fibromyalgia, chronic fatigue, arthritis, and several other conditions is quite difficult, but so worth it to me. I manage a family owned restaurant. Not just any family owned restaurant, a very successful and quickly growing restaurant. It is busy, fast paced, and there is always something to attend to. My mother took a huge leap of faith and started the business over seven years ago, and since then we have quadrupled (at very least) in size. I have been working for my mother since the beginning of our journey, plus or minus a few months. That was when I was only 16 years old! I have to admit that I was not the best of employees for a few years. I would have fired me several times over.

Over the last several years I have taken on most of the responsibility of the everyday management. I am the personal/public relations department, the advertising department, the networking department, the full time baker, a server, and I get to be the one to deal with all of the extremely random situations that pop up. There are so many different things that pop up all of the time. It is amazing the random problems that come up in a restaurant from the little things like employees calling off or running out of milk all the way to the big things like disgruntled former employees trying to sue me. I deal with it all.

The stress is quite intense and does not do my body well at all, but I love what I do. My employees respect me, they treat me kindly and they work their tails off for me because I do the same for them.

Here is my problem: Holy Crap! I am so worn out. I am only 24 and I can hardly keep up anymore. That not only sounds awful, but the toll it takes on my pride is an even bigger, more monstrous problem. I am good at what I do, I only wish I had the energy it took to be even better. How much longer can I keep this up? Can I keep it up as long as it takes to someday own it myself? 15, maybe 20 years? That is a long time for someone with chronic pain to be under that amount of stress! Can I do it?

I honestly do not think I can. No matter how badly I want it, my body simply will not be able to do it.

This is the sad truth for people living in chronic pain. We want to be productive members of society. We have aspirations! We want success and the chance to make our lives more rich with pride of ourselves. But can we? Well, sure. But, just not the way we had planned to before our bodies were stolen from us.

So, if I do not think I can make it long enough to own the restaurant in which I grew up, then what on Earth am I going to do with myself?

Several years ago I already knew the fate of my body. I did not have a diagnosis, nor was I sure what the hell was going on with it, but I did know I was getting weaker and weaker each year. I knew that the pain would get worse, and that my body was not going to be able to participate like it used to. I thought I was going to loose the use of my limbs to be frankly honest. I made sure I got myself into online school right away and got my Bachelors degree in psychology just in case I needed to take a desk job somewhere.

Oh, desk jobs...... That kind of sounds like hell to me, but at the same time my body is begging me to take one. I knew I couldn't make it through anything boring or I would go insane, so I did a ton of research about various desk jobs that I might not suck at. I spent months deciding what I wouldn't absolutely hate doing. Finally, I fell upon a medical transcription course that I could do at my own pace, but wouldn't take more than 2 years. I forked out a fair amount of money, and a vast amount of time and dedication into this course. I bought books upon books, and spent hours studying and practicing. I was good at it and it was something I found a ton of interest in. What Spoonie wouldn't find interest in medical jargon and transcribing surgical procedures? It was honestly kind of fun, well, until it wasn't anymore.

I got so tired of being stuck in my house and in front of my computer, and I wanted to focus more of my energy on the restaurant. I was running out of energy to do both so I had to choose. I chose the restaurant, of course, I mean I grew up there and couldn't let my mom down.

Some days, I wish I would have finished that last course. One more class and I would have been done, but I chose my mind over my body. I went with what my heart wanted rather than what was best for my body. I regret it some times. Why didn't I listen to my body and what it was telling me? Oh yeah, I was in a remissive period and I felt fairly well! Only to regret it with the next flare.

Why is it not able to have two different jobs? One where your work during a flare, and one that you work when you are not? Too damn bad the world doesn't work that way. So what is going to work as a career for me and everybody else living with fibromyalgia?

The only job that really comes to mind that would work for someone with fibromyalgia is a job at one of the organizations that support fibromyalgia. That would be awesome! Who would understand your work limitations better than the leading researchers and voices of fibromyalgia? You would be working for a cause that you are motivated by both professionally and personally. What could be a better career prospect than that? And can we really expect to even hold a career with the symptoms and the pain that we endure? Lord, I hope so, but that is all I can do: HOPE.

Unfortunately, I do not live in an area where there is even a association or organization within a 500 mile radius, at least, so that kind of plows that prospect.  But, if you do suffer with fibromyalgia, this would be something worth looking into for sure. I am going to assume that they are nearly always looking for help either for profit or non. Volunteering your spare time if at all possible also helps the cause.

Someday, there will be more opportunities for us. Someday, there will be more research, more fund-raising, more understanding. Until then, we will fight every single day, we will stand tall, and we will make it by the best we can, the only way we know how.

Gentle hugs, or no hugs because that hurts less....

-Aimee

I Feel A Nervous Breakdown Coming On.... (w/ plenty of explicit language.....)

I am so tired and so fed up with people that I could scream. Really, I should find the thickest pillow I can find and just scream into it as loud as I possibly can. I just might have to do that. I will add a metal note to add that to the list of ten thousand other things I need to do. I might get around to doing it here in the next few days, or weeks.... Crap! I have no time for a mental breakdown right now but I feel one coming.

You know those, I know you do. Where everything in your daily life just keeps piling up so high that you don't even know where to begin. On top of that, you are in the midst of a flare, or you can feel one creeping up on you. That is when it gets you. That is when it strikes. When the pain becomes unbearable again and you look at your pile of crap to attend to, and all you can do is break down. Your whole world collapses around you for awhile and all you can do is plan an escape from it. I know you know how this goes..... You have been here before. Probably time and time again....

God knows I have been here so many times before. The sad part is (not to toot my own horn here) I am one of the strongest people that I know. I know a whole lot of strong people, but I am one of them. I have a great career, a great family, a great husband and child, with our own house and enough money to cover our bills. At 24, I would say I am doing pretty damn good for myself. I am one lucky person, but I have busted my tush to get where I am at. I am mentally strong. Hell, I have had to be my whole life. I feel like if the concept of reincarnation is truthful, then I have lived many times over already. I can claw my way out of depression and anxiety at its worst (well, most of the time). But, I will tell you that even I get to the point where I just need to break.

Maybe 10 ice cold Budweisers would do the trick?.. Then I have to remind myself that it is NOON. Although it is probably 5 O'clock somewhere, it sure as hell isn't here. So I hop in my car and I just drive....... anywhere really. Around the lake, through the back roads, or just anywhere I can roll down the windows and breathe the fresh air for a little bit. I get to be alone when I drive, and anyone who is a mother can understand how much of a rarity that is! I just want to be ALONE sometimes. Not because I don't like people or because I don't like spending time with my loved ones, but because when I am alone I have time to try to find myself again. I get lost in this hollow stranger of a body I have. The real me just gets trapped in there; screaming to be set free. Sometimes I just need to spend time alone to find her again. This usually includes driving or writing for me. These are some things I NEED in order to keep me...... well, me.

 

Problem is, it usually takes me quite a bit of solitude to find me and bring me back. That is not something I can get a lot of. I am a busy mom and have a busy career that I can't really get away from for long enough. I really want to disappear into the woods for the weekend but my job requires that I have constant cell service, and that is if I even get a "weekend". Weekend? What does that even mean? Dear Lord, I need a vacation. On the days that I actually do not have to attend to something at the restaurant, I get to spend it cleaning the house. Oh goodie! Sometimes my days off are more work than a day at work. I end up dripping sweat while scrubbing the crap that needs to be scrubbed, vacuuming, dusting, folding, washing, sweeping, mopping, etc., etc., etc.,...... etc., etc. And more etc. You get the stinking picture! And you know because you have probably been there! If I don't do it, then who the f**k will? My husband says (bless his well-meaning and naïve heart) "If you don't feel like doing it, then don't do it." Well, my love, then who is? Are you going to do it?


Now, don't get me wrong. My husband is supportive and helpful. He works hard at his job too, and he does his chores, and often offers help, but he isn't going to remember that the toilet needs to be scrubbed! Maybe once it has an inch thick film on it..... EWW! Is he going to remember that the sheets need to be changed and that it has been a year since the last time the oven has been scrubbed.... Um, no. He won't. Will he remember that the dogs and fish need to be fed, as well as the child? Does he even know how to cook anything besides Ramen noodles and elk steaks? I do not even know! Does he have any clue on what days the kiddo gets his baths? Probably not. I wonder if the hundreds of leftovers in the fridge would grow legs and wander to the garbage themselves? "Just don't to it.......?" That is an absolutely ludacris idea! It wouldn't get done. So, guess who is going to keep doing it.... I will give you two guesses, but you will only need one.

 

Women work their little tails off, boys! In case you have not noticed, which you probably haven't. On top of the old stereotype of the woman being the home caretaker, the child caretaker, and the husband caretaker, we are also expected to keep an income coming in as well. With all these things to do it is no wonder that our libidos are in the negative! We have no energy for that shit because we are too busy taking care of (almost) EVERYTHING! When we ask for help, it is like we are making you go out of your stinking way to help. But you want help getting rid of your erection? Ha! Well I want help folding the laundry and changing that shitty diaper for the tenth time today. Welcome to this century boys! Time to step it up because God knows that women have already stepped up 10-fold. This isn't the 50's. Time to realize that women will soon take over the world if you can't step it up because we will have to start taking care of that part too!

Maybe it's my meds (or lack there of) talking, but boy I am so cranky and tired that it is probably best for everybody's sake if I do spend some time alone. Either way, I'll get back to doing what I do. But maybe a vacay should be in the plans, soon. 


How many of you have gotten to the point where you knew that there was a breakdown, a major flare, or both coming? You are more than welcome to rant here. We all need it....

-Aimee

Thermoregulation in Fibromyalgia

http://altered-states.net/barry/update274/

Last night I was feeling under the weather and just lousy. I felt like I was coming down with a "normal people sickness"! Now, those of us with fibromyalgia know exactly what that means. Throw in an illness like the common cold on top of our everyday sickness and we just feel like the world as we know it is ending. Though, strange as it is, my fibromyalgia sometimes gets better when I get "normal people sick". Don't judge, but I sometimes wish to get a cold just for an escape from the fibro for awhile. Other times, I'm not so lucky. Anyways, I was feverishly burning up, and felt like I was going to pass out because I was so damn hot. So, I went and grabbed my temporal thermometer, and took my temperature. 95.0 degrees Fahrenheit!!! WTF? That is hypothermic temperature. This cannot be right I told myself, so I compared it to my sons temperature. His was a healthy 98.4. So, I tested mine again. 95.2. And over, and over again I took my temperature. They all came out about the same and my son's always came out normal.

After a little bit of research on human body temperature I learned that in temperatures such as this classify as hypothermia. Typical symptoms of hypothermia are intense shivering, bluing or greying of the skin, mental changes, and a few others. I didn't have any of these, except for the mental confusion and being really unfocused. No shivering, no discoloration of the skin. I did not even feel cold. In fact, I felt very warm. So, what was going on? This is not the first time I have noticed that when it felt like I should be running a fever, my temperature was abnormally low. It went up by a couple degrees but peaked at 97.2. This morning, I took my basal body temperature (the first temperature in the morning before any activity). It was at a steady 96.8 for most of the morning, and rose to 97.6 in the afternoon. Still below or just finally reaching the normal range,.

Now, any physician or anybody with any sort of medical background knows that a person's body temperature is one of the most important indicators of health. A low body temperature can lead to all sorts of significant symptoms, most of which are the same symptoms that are associated with fibromyalgia. Headaches, aches and pains, slow metabolism, weight gain, mental fogging, sleep disturbances, and many, many others. So, what is the connection?

Current studies point to a central nervous system component of fibromyalgia, particularly the autonomic nervous system. This controls everything we are unconscious of; heart rate, breathing, and body temperature among other things. Ah, body temperature. Our hypothalamus is supposed to be helping to regulate our body temperatures, which is yet another organelle that has been proven to be affected in fibromyalgia. So is our unbalanced nervous system causing problems for our hypothalamus, or is our hypothalamus making adverse changes in our nervous systems? I have not run across anything that gives me the answer to this yet.

Either way, having a low body temperature can wreak havoc in your body. Imagine really thick viscous blood that flows more like molasses. Imagine every cell in your body trying to perform it's duties in an environment that is not meant to support cell life. Imagine molecules slowing down and not being able to perform their duties at all. Imagine a pH change significant enough to start causing cells to commit apoptosis, or cell suicide, programmed death. Slowly, these cells die off and the regeneration of cells is much slower than in a normal temperature body. Eventually, sickness ensues and wins out. If your body stays in a state as this for long enough it can become Wilson's Temperature Syndrome, which is associated with poor thyroid functioning. You can learn more about it here: http://en.wikipedia.org/wiki/Wilson%27s_temperature_syndrome

The question now is how do you increase your body temperature? Exercise is the most obvious answer, but typically the temperature returns to below normal soon after exercise is complete. Maybe natural supplements? Chili peppers? Hot baths? More and more exercise? I really am not sure.

Has anybody else noticed a connection between their body temperature and symptoms of fibromyalgia, and if so, how did you regulate your body temperature? Did you share your temperature changes with your doctor, and if so, what advise did they give you? Any comments you leave are sure to help not only me, but many others who are also have these same questions.

Thank you for reading.
-Aimee

Greiving Is A Natural Response to Illness, Don't Be Ashamed!

This is the one thing I have heard most often when telling people about my fibromyalgia. "Hey, at least it's not cancer or MS or heart disease, etc." Boy, you are right, at least it isn't cancer. Let me not grieve because I got so lucky that it isn't cancer. Telling people not to grieve over their illness because it could be worse is like telling someone not to be joyful because other people have it better than them. It makes absolutely no sense! "Don't be sad about your cat dying little Billy because little Sally lost her dog this morning". "Now don't you be angry about loosing your husband because so-and-so lost their mom". "Don't be happy about winning the jackpot on the keno machine because someone else won the lottery." "Don't rejoice in your healthy, happy child because someone else's child is healthier and happier." You see, life doesn't work that way. So, please stop telling me I should be happy because I don't have cancer.

- With Love From Every #Spoonie Ever

You can't see my battle scars.

It is so interesting to me how we can feel the way we do and look just fine. How does this happen? I can go to work feeling like I was drug behind a truck with a rope tied to my ankle for 30 bumpy, rocky miles. Every fiber of my being aches. People can not contemplate how your head, legs, arms, neck, back, and feet hurt all at the same time. Your insides roll, and quiver, and shake. Your back muscles twitch, while your calves near spasm every time you take another step. Every muscle that isn't twitching is so taught with tension that your are afraid to lift things for fear that it will get any worse. You feel like every muscle is going to give out. On top of that the world is practically spinning, and you are so dizzy you feel liking running to the nearest bathroom to prey to the porcelain gods that this will all just go away! We can make it through days like this. We do it all the time. And still, even on days like that we still hear "You look good today". All you can do is laugh at that point really. I am so glad I can still look good through all of that, now that is fucking talent!

This is a common scenario for people with fibro, chronic pain, and autoimmune diseases. My body is destroying itself from the inside out, attacking itself all of the time, but nobody would ever suspect anything if it wasn't for us telling them. Better yet, you could be miserable one day and drastically better the next. Without us coming out and telling people, they would probably never know. We literally have to come out of the #Spoonie closet. This unfortunately usually leads to them not really believing you, or not understanding at all.  Still, it is a process, a difficult one. I started with my closest family, and didn't even do that until I had a near mental breakdown over the pain. I have mentioned it to coworkers in passing, and a friend or two. It was hard, and still is. There is never a good time to bring up your suffering, so you keep that beast locked up. Unfortunately, I am getting to the point in this disease that I am having trouble hiding it anymore. It is getting to be to much to hide, to lock away, to grin and bare. I am almost always limping, grinding my teeth, and holding my back like a 90-year-old. I can't hide it no matter how hard I try, but I also can't talk about it no matter how hard I try. Between a rock and a hard place, really. 

I know the healthy way to handle this problem, and I understand the destructive natures of the other path. I can preach about communication until I was blue in the face, but practicing it is a whole different story. Some day, I really hope to be an advocate for Fibromyalgia awareness. I want to start support groups, and plan events. I have a LOT to work on mentally before I get there, but that is my goal. I guess I better learn how to talk about it and even just tell people first. HA I set this specific goal for myself simply because I knew it would make me have to learn to better communicate, and learn to better live with what I was given. Which, will also help with my ultimate goal of becoming more transparent.

My husband has told me that the entire first 6 months we were dating, he had no idea how I even felt about him. That hurt to hear honestly, not because he hurt my feelings or anything, but because I realized that I don't show those I love how much I care about them because I am too busy hiding behind this damn mask. Too busy trying to hide my pain, my sadness, my worries, my fears. I didn't realize that in hiding all of these things, I began hiding myself. That is one sucky quality to have, so I'm going to change it. I'm going to become more transparent. For my marriage, for my son, for myself. My son should know how much I love him, my family, my friends, they should know too.

Let's talk about guilt and stuff....

One very difficult thing to live with is guilt. Many people feel guilty for various reasons, some that they can control, some that they can't. Some might have committed a crime, or hurt someone, broke someone's heart, not given enough, needed too much, or just plain feel guilty for being themselves. Guilt is a hard emotion to deal with. If you let go of your guilt, are you letting down the person you feel guilty for hurting? This scenario often only creates more guilt in the person trying to let it go. Yet, if you hold on to your guilt, the only person you are hurting is yourself. Some, such as myself, would rather hold on to the guilt themselves rather than hurt the people they are trying to protect. Guilt comes in many shapes and forms. Some might drowned their guilt in alcohol, some might hide their guilt, yet others might communicate their guilt, or become dependent on things to distract them from it. Everybody faces their guilt a different way, some healthy, some not so healthy.

I live with a great deal of guilt. There I said it, I FEEL SO GUILTY!!!! Wow, that felt good. I feel guilty for not being able to live up to expectations. I feel guilty for not being able to keep up with everyday things like a 24-year-old should be able to. I feel it everyday. I feel guilty that I don't have the energy to play with my son more often. For not being able to cook a decent meal every night, or even most nights. For not being able to keep my house clean. For not being able to enjoy hobbies like hiking and hunting. For not being all that I can be for my husband. For not being able to perform at my best at work. For disappointing my mom. For loosing my friends. For being unreliable. I FEEL SO, SO GUILTY.

One of the biggest decisions that I am facing in my life right now is my career. Nearly 8 years ago my mother opened the doors of her first restaurant. At 16 I began to work for her as a server. It was a tiny building next to a highway with only 7 tables and a small rap around bar. Within a year or two we had lines running around the outside of the building. Way too many customers for such a small place, so we found a new place and moved the business. Again, two or three years later we had outgrown another building. Now, our current location is also becoming a bit cramped. I grew up in this business. I have been waiting tables for as long as I could have a job, possibly 9 or 10 years. Now, this place has become my baby. It is my home away from home. I love it, I nurture it, I try my best to make sure that it is the best damn place to go in town, the cleanest place, and the friendliest place. This also means that over the years I have become the general manager, I make about 50 to 60 pies a week, I do all of the advertising, networking, hiring, firing, a lot of the training, organizing, blah, blah, blah. I am also "on the floor" waiting tables 4 days a week as well. I love my job! I mean I love my job when I am not having a flare...... I do a lot. Even for someone who does not have fibromyalgia, I do a lot. It is stressful, and wild, and irritating, and some days I just want to throw up my hands and quit, but I am so emotionally attached to it that this business has become my baby. I do not know what I would do without it. My mother has put up with a lot of my faults over the years, but I always try to make up for it by busting my ass, but sometimes I just simply can't. During the 5 years or so that I had been trying to figure out what the hell went wrong with my body, went to college and got my Associates in Psychology and went on to schooling for Medical Transcription because I knew I would never be able to keep waiting tables and managing a business. I thought that I had MS for well over a year so I thought I was going to have to take a desk job, and I enjoy medical jargon and such so I finished the Medical Transcription course. Then I decided I would never survive a desk job. I like to be up and going. Anyways, I stayed at the restaurant regardless. Now, I'm struggling to keep up at all.

This restaurant could be mine one day, and I dream of the day it is. I am set up for a future that can hopefully be adaptable to my ever changing health. If I could only make it until then. Half the time I honestly feel like I am dying, and that is no joke at all. I am sick, very sick. I am ill, and I have finally come to terms with the fact that I have fibromyalgia. I am draining myself, my health, by doing what I am doing. I am pushing my body far beyond it's limits. It is screaming at me to stop, but I can't.  There is no way that there is not severe damage going on inside my body. I can't stop here. I want to do so much more. I want to be successful, and be happy, and be a great mom, and a great wife! But, this disease is tearing down my dreams. I can't make it long enough to own it, but I cannot qualify for disability because I could technically take a desk job.  I am afraid for my future, and my capabilities. It is hard to make the choice between a career and your health, and that is a decision that a 20-something-year-old should not have to make, ever. That is a decision that I am not ready to make. It not only affects me, but also my family. My husband, my son, and my mom. I always wanted to prove to my mom that I could handle it, and I can, but not without really making myself suffer for it. I dream to be able to eventually own the business and fund my moms retirement account. But, how can I without killing myself in the process? I would feel so much more guilt to have to walk away.

Oh guilt, how you destroy me. I want to be the best wife and the best mom. I have trouble keeping my patience when I am in so much pain. But, no matter how much pain I am in, and no matter how deathly ill I feel, there is still a lot to be done. Dishes have to get done, the family fed, the kid his bath, and the nightly bedtime battle with a 2-year-old. My husband is supportive, he says "if you don't feel like doing things, just don't do them". I love him for understanding, but how the hell are things going to get done then???? He often works late, and is not here to help when at work, so it is up to me to get things done. I can't just not feed the kid because I don't feel well. It doesn't work like that. It is not practical. I feel so guilty when I can't fold the umpteen baskets of clothes that I can't hardly stand it. I do it anyways. I can't stand the dishes piling up, so I do them. The house needs dusting, so I dust. The lawn has to be mowed, so I mow. I just do it. I can't not. Unfortunately, this only results in more BLEEPING pain, and putting myself through all that while in pain only escalates all of the other freaky symptoms. Soon, it spirals out of control. The anxiety and depression start to roll in. The muscles in my arms, face, and legs start to twitch near constantly, then everything goes down hill from there. I have been in this same flare for more than 9 months. This is the longest one I have had so far, and it only seems to be getting worse. I am starting to wonder if I will actually ever come out of it. I am terrified that this is it. I cannot remember when my last "good day" was. I have become so used to feeling like hell that I really do not know what it feels like to be okay. There is so much more than pain in fibromyalgia, but the pain is the absolute worst part about it. I gave birth to my son naturally with no medication, and some days, the pain is comparable to that. At least that pain had an end. I broke my clavicle playing football with friends (which is the accident that triggered my fibromyalgia) and I would so much rather have that pain back than this. That pain also would have had an end if it didn't lead to this crap. But, if you put a person in that much pain for 9 straight months, they are bound to want to do something crazy. Knowing there is no cure, not even a single treatment that has helped only makes your soul bleed. Knowing your friends and family will never understand. Now, that right there is enough to drive a person mad! I sure hope I have the strength to make it through this. I'll keep fighting, because that's just what we do. We are bad asses because we do fight through this crap! And we survive, just with a little less of our soul.


(Side note: People need to realize that servers are actual, breathing, human beings. They have kids, families, aspirations, dreams, and work their tails off to make other people happy. Many servers have college degrees, but can make more money being a server. Also, severs should not be treated as robots, servants, or low-lives. Because servers make their living on tips, they are taxed heavily on those tips. If you go someplace and do not tip your server, you are actually costing them money to wait on you. Please, please, do not be one of those customers that costs me money to wait on.  15-20% is the average tip, but if your server worked hard to make your experience enjoyable, then they probably deserve more. Treat them well, and they will surely make you a priority and make your stay a great one. And even if you do not agree with tipping, at least be respectful and courteous so they don't associate your face with the devil.)