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

What "Good Days" Mean to People with Chronic Illness/Pain

In some silly ways having a chronic pain condition can be a blessing. I never would have believed this years ago. I mean what is to be thankful for about having an incurable chronic illness? Really though, there are some things that we can be thankful for. Here are a few things that having a chronic pain condition has taught me:

Good days are GREAT! When you live your life day to day not knowing how much pain you are going to be in that day, you tend to get extra excited about good days. A good day for me is a day with low pain levels or other crazy symptoms. You know, those days where you almost feel "normal"? Those days when your symptoms subside enough for you to ENJOY your very existence. You can't help but smile because you feel like you again. You feel like you actually have a personality, like you can just be yourself! These can be ordinary days for every other person around you, and nothing special happens on these days. No promotions, no abnormally nice people, nothing really makes that day special besides just NOT being in an alarming amount of pain. It is almost like you feel like a superhero, a ninja, on these days! And God, does it feel good!

It is funny really. Good days such as those are hard to come by, but when they do you try your best to make sure you get the most of it. I do not even want to go to sleep on those days because of the fear of loosing it. Loosing the freedom to be normal. To be like everyone else. To just have a day to be you again. I fear for not having any more good days because it has been so long, but it is something to hope for. We hope for good days and we pray that they will stick around for just a bit longer.

On those good days, we hold our children longer, we give them more hugs and kisses, and we get to play with them like we wish we could every other day. We spend more time with our loved ones and we get the opportunity to cherish them a little bit more because it is a good day. We spend less time fixated on our war-ridden bodies and have more energy for everyday things. You wouldn't think you would be excited to get the dishes done until you have a chronic illness that messes with your ability to do them. On good days I find joy in cooking, and cleaning, and working, and just walking without a limp. These everyday things would seem senseless to be so excited over to most people, but I know that other people living in chronic pain will understand exactly what I am talking about.

I guess what I am trying to get at here is that I may not like my illnesses, if fact I hate them all with a passion, but I do not hate what they have taught me. They have taught me to love a little deeper, to enjoy life despite my circumstances, and to find excitement in everyday things. For that, I am so thankful.

Speaking Up On Fibromyalgia

Fibromyalgia and chronic pain conditions are awfully lonely ailments to live with. Not many people know that millions of people live in nearly constant pain. It is not common knowledge. In fact, although fibromyalgia has been around for numerous years, it has only been almost fully accepted within the last few years. Most of the time if you were to tell someone that you had fibromyalgia they would look at you like you have 8 heads. So even if it is accepted by the medical community, it is still not a condition that is widely known by everyday people. Of course, once you are diagnosed, your family may become more knowledgeable about it if you are lucky. They might try to do some research and learn the most they can about it, but most won't. Though, in my own opinion, if they truly cared they would make an effort to at least educate themselves about your condition and how it affects you. But, on the other side, it is also our responsibility to help them become more educated about our condition. This is the hard part! There are some resources out there with things you can print off for your family members, but most do not really touch on what it is really like to live with chronic pain. So what can we do? We could make our own pamphlet with all the information we feel is relevant to our situation. We could write a poem or letter to our family members. We could draw what we think chronic pain looks like. We could write a song or prepare some sort of speech. Whatever your talents are focus on that to get you started. If you are good at drawing, start there. Let's create some amazing informational pieces for family members that millions of people could use to help them describe what it is like. Let's raise awareness! If you know of any great resources, please share.

Really, one of the first tasks to tackle after being diagnosed is to talk to your family and friends. This sounds so simple, but yet it is one of the most difficult things to do. I struggle with this every day. One thing we always worry about is that we won't be taken seriously. This usually stems from the years it takes to even get a diagnosis and the years we felt misunderstood and ignored by our doctors, family members, and friends. We could have spent years of our lives being thought of as lazy, crazy, or as hypochondriacs, I know I did. Those were the most difficult years of my life, and I just learned to change the way I relate to people including becoming more closed off about my illness. Besides feeling misunderstood we also don't want to complain to people. When we do talk about it, we assume that the person having to listen to us thinks we are only complaining and whining about our misfortune when really, we just need to vent, to be heard. We worry that we will put extra burden on our loved ones by telling them about it. We don't want to make others worry about us or feel sorry for us, we just want understanding. Mostly, we don't want to hurt people, and we know that the people that love us hurt when they know we are suffering. It isn't easy on them either. Watching the one you love suffer and not being able to do anything to help. I imagine it is a harsh reality for them as well. So, not only does our illness cause us to suffer, but also those around us as well.

If you broke your leg or have some sort of skin condition, there is at least some story behind it or some physical evidence of it being there. People can see it. You have a cast that is visible and often other people have broken something and can relate in some way, or they might even ask about it. It is not like that with an invisible illness. For the most part, nobody has any idea you even have a chronic illness. Nobody is going to ask about something they do not know about. Nobody is going to say, "Oh, how much longer until you are all healed up?" (and if they did, we would probably get a bit bent over the comment). There is no healing of chronic conditions. They are just that, CHRONIC, meaning long-term, FOREVER! It will not go away, and it cannot be cured. Yes, there are things that can help some, but it is something we will live with for the rest of our lives. The pain, the fatigue, the brain fog, the unbearable twitching, and wreathing, and crawling, and stabbing sensations. The bowel irritability, the depression and anxiety spells, the exertion intolerance, the hundreds of symptoms. Those are not going away. In a way, we learn to live this way. We teach ourselves how to ignore the pain and twitching. We learn how to hide our symptoms. We learn how to get around and space out our days. We learn what helps and what doesn't. Honestly, chronic illness is very time consuming. It is amazing how much effort and time goes into trying to make yourself feel just a little bit better. Hours and hours every month spent in doctors' offices, physical therapy, and other therapies. Not to mention the amount of time we spend trying to learn as much as possible about your particular illness. I don't know about you all, but I spend hours learning about all of my illnesses and trying my best to find things that can help me more. I like to be educated about whatever I am dealing with, so much of my time goes into that.

In all reality, it's not like you can strike up a conversation about pain. Nobody really wants to talk about pain or unfortunate situations. It is only in our nature to avoid subjects involving pain and unpleasantness. Besides, trying to talk about our unpleasant symptoms only makes other people feel uncomfortable. We see it, and we really try not to make people feel uncomfortable with us. We feel as if we are dragging our loved ones down with us. This is not something we want to do. Hence the reason we typically just stay quiet about it. There is no sense in making other people awkward and uncomfortable along with us. Why drag others down with us? But, what happens when we avoid talking about our situation for extended periods of time?  Well, we go bat-shit crazy is what happens.

We tend to start secluding ourselves from the outside world for fear of the pain brought upon ourselves and others. We fear pain so much that it controls every waking decision of our lives. We start obsessing on how to make ourselves better. We hide from our friends and family so they don't find out how bad it really is. We fight tooth and nail to make it through the rough times, and we use every bit of energy trying to get well again knowing that it may never happen. We loose ourselves in the midst of our illness.

If we do not find some sort of way to communicate, our illness can and will consume us. So, I suppose that whether or not we are perceived as whining, lazy, hypochondriacs we have got to speak up and speak out. Write a poem, a speech, a letter. Make a blog, a diary, a craft collection. Raise awareness and don't be ashamed. Attend a support group, or create a chronic illness event. Do what makes you happy and allows you to have a voice. Let's stop being ashamed, scared, and secluded. Let's find a cure!

To the friends and family of people with fibromyalgia

To the friends and families of people with chronic pain conditions and/or fibromyalgia:

I would love to spend some time addressing just what exactly fibromyalgia is. Fibromyalgia is a central nervous system disorder that branches off from an even broader condition called dysautonomia. Firstly, because fibromyalgia can be a consequence of dysautonomia, we should learn what that means. Dysautonomia is a general disregulation of the autonomic and sympathetic nervous systems. The sympathetic nervous system controls everything that you have no conscious control of (eg., breathing, heart rate, body temperature, vasodilation/constriction, digestion, and much more). When the central nervous system enters a state of disregulation, chemicals become imbalanced, the signals get confused, and it becomes, more or less, stuck in the state we would call dysautonomia. Having dysautonomia may often lead to developing fibromyalgia. Now, this means that people with fibromyalgia would also have dysautonomia because this is where it stems from. Although scientists are not exactly positive about the cause of fibromyalgia, current studies point to a central sensitization component. Studies on this show that the brains of people with fibromyalgia interpret pain in a much different way than people without. The signals that are sent from our bodies are misinterpreted by the brain as pain. This does not, in any way, mean that the pain is not there, or that it is not real. The nervous system just seems to forget how to turn those pain signals off. The brains of people with fibromyalgia also show physical changes, such as shrinkage in some areas known to be correlated with pain and the perception of pain. Other studies show that the quality of sleep that fibromyalgia sufferers have is under par compared to that of someone without. Our sleep has been proven to be interrupted by awake-like periods that keep us from entering the deep, restful sleep that is needed to heal the body. Many more studies are being conducted as well. Needless to say, fibromyalgia is a real disease, with very real symptoms, that should be managed by a medical professional.

The symptoms of fibromyalgia are extremely diverse, and everyone experiences them a bit differently and to various degrees. Because it affects the central nervous system, nothing is off limits when it comes to symptoms. The most commonly known, and most prominent symptom of fibromyalgia is pain, wide spread pain. The pain of fibromyalgia is not limited to one area, or even a few areas at a time. Often, it is usually prominent, and moderately to severely painful, in many areas of the body at once, compared to the other areas, which simply ache at the same time. It is almost an indescribable pain, one that encompasses every part of your being. On the best of days, everything only aches. The pains move rapidly, or they build up after one another.  Shooting pains, stabbing pains, aching pains, throbbing pains, you name it, we get it on the daily. The second most problematic symptom for me is the extreme fatigue. Many people with fibromyalgia also have a diagnosis of chronic fatigue syndrome. This causes debilitating fatigue that makes it difficult to complete everyday tasks. This is most often caused by the lack of restorative sleep that most fibromites experience on a nightly basis. It is much different from the being tired from a long day at work. The exhaustion that people with chronic fatigue feel is far beyond the point of just tiredness, and they feel it nearly constantly. Feeling tired is only baseline for us, so when we finally complain that we are tired it means we are exhausted. Irritable bowel syndrome (IBS) is also very common in people with fibromyalgia. This often causes pain in the stomach, alternating diarrhea and constipation, and sensitivities to food among other things. Fibromyalgia is also notorious for causing headaches, frequent ones. It is linked with migraines and tension headaches, but I seem to experience a mixture of both that come and go on a daily basis, often lasting for several weeks at a time. Sensitivities to stimulation are also a huge factor in fibromyalgia. Loud or repetitive noises, bright or flashing lights, or fluorescent lights can be interpreted as pain to fibromyalgia sufferers. Large groups of people, or being around emotional stimulation too long can be over stimulating for many people with central nervous system disorders. Overstimulation often leads to more or worsening symptoms. Twitching, muscle spasms, and spasticity are common muscle symptoms. Cognitive issues such as memory problems and speech disturbances affect many, as well as depression and anxiety. Heat intolerance, cold intolerance, exertional intolerance, chemical sensitivities, rashes, dry eyes, dry mouth, dizziness, malaise, and much, much more. These are only a few of the symptoms that are experienced by people with fibromyalgia.

As you can see, there are a significant amount of symptoms associated with fibromyalgia. Because of the wide array of symptoms doctors, family, and friends are quick to dismiss the many problems as being made up or of the psychiatric nature. After it was found that between 3 and 5 million people have this same kind of story to tell, the scientific community started becoming a bit more responsive about admitting there was a basis to these complaints. There is now scientific evidence proving the validity of the disease, formerly called a syndrome. The hard part is not convincing the scientific community, nor convincing the doctor that sees you, rather the friends and family that see you most often. Fibromyalgia is considered a "invisible illness" because it cannot be detected by just looking at someone. People watch you complete everyday activities all the time, but they do not see how much pain you are in while doing them. Fibromyalgia can create a great deal of difficulty with the simplest of tasks. A person with fibromyalgia cannot push as hard as a person without or their condition can escalate into a flare. A flare is a period of time where the symptoms and pain increase considerably compared to that of that particular person's baseline level of pain, fatigue, and other symptoms. Flares can be brought on by heat, cold, stress, exertion, or illness. This makes it more difficult for others to understand or sympathize because the sufferer could be "normal" for stretches, and then all of the sudden become tired, in pain, cranky, and depressed for another long stretch. Employers, although required to make adjustments to meet the needs of the employee with fibromyalgia, often brush the person off as lazy or unreliable and are quick to replace the individual. At least 1 in every 50 people you meet has fibromyalgia, but you would never be able to tell those who do from those who don't.

Those who do have fibromyalgia typically fall into a distinct "type-A" kind of personality. They have big dreams and a lot of goals to meet. They have a "get er' done" kind of attitude about them, but they also tend to have a high amount of stress in their lives. Some point to this as the cause of their ailments, but studies have not proven it. People with fibromyalgia are strong, some of the strongest people you will ever meet. They tend to hide their pain from their loved ones and often suffer in silence. They try their best to look and feel as "normal" as possible, but often struggle at keeping up with work, kids, the household, and a social life. Friends are often cancelled on last minute because the sufferer is not feeling well or is hurting. Many people with fibromyalgia cannot hold a steady job because of the unpredictability of their illness and must rely on assistance for income. Others can work with difficulty if the work conditions are favorable enough. Either way, fibromyalgia affects everybody differently. Because their is no cure, people with fibromyalgia are expected to live the remainder of their lives in pain.

Because sufferers face the harsh realities of knowing that the rest of their life will be lived in pain, a huge number of people with fibromyalgia also are affected by depression and anxiety. Who wouldn't feel hopeless and miserable knowing that their lives are be to lived in a massive amount of pain with no end? Luckily there are a few treatments that may improve these symptoms, but there is nothing that can cure fibromyalgia. Please help us to raise awareness so that one day there might be hope for a cure.