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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

When Personalities Conflict With Illness

My personality and my illnesses do NOT work well together at all. I like to be busy, with some rest time of course. I like to be challenged at whatever I do. At work I continually take on more and more wherever I can, although my pay doesn't compensate me nearly enough to do so. I do it anyways because I get bored without a constant challenge. I always want to learn how to do more, more, more. I always try to find the fastest, most efficient ways to complete everything. I would say that has become a talent of mine after developing fibromyalgia. Making big tasks smaller and more manageable I suppose. We all have to learn it to make our lives a little bit easier. If we can make every single task a little easier, a little faster, and a little more efficient, then we are saving ourselves tons of time and energy in the long term, or at least I like to think so. That is what I keep telling myself.

In all reality though, living with a chronic illness that no one else sees can be devastatingly difficult. There are only so many ways to attempt to make our lives easier. I can only find the fastest, most efficient way to do the dishes, but I cannot make them do themselves. I can find the easiest ways to complete my job, but that job still needs to be completed. When you have fibromyalgia or any other chronic illness, everything seems more difficult than it used to. Walking up and down the stairs in my house is quite honestly so difficult for me that I dread having to go downstairs to do laundry or whatnot when I am not feeling up to it. It doesn't mean that I cannot physically go down the stairs because I sure as hell can, but the amount of energy that it uses simply isn't worth it to me. It is amazing how one flight of stairs can make me feel like I just ran the Boston Marathon. I get dizzy, nauseous, extremely fatigued, and my legs feel like Jello afterwards. It is literally exhausting to use the stairs for me, yet every time I visit the doctor or any other place that has an elevator, I still choose to use the stairs because I am just that stubborn.

I can't avoid the stairs for all eternity, although I wish I could. I take the stairs for the conditioning I suppose, or just to prove to myself that I can. Every time I regret it because I am worn the heck out afterwards. How embarrassing is that? Most people would think "Wow, you must be really unfit." There are some days after work that I pull into my garage and just sit in my car because I just cannot find the energy to get out of my car and go inside. Sometimes I just cannot find the energy to even speak to people. People might find me to be rude or anti-social, but in all reality, people just take a ton of energy. Even just having a conversation is so tiring that I feel like I might pass out from exhaustion. This really doesn't bode well for my social life. People think I am mad at them, or they get mad at me for not keeping in touch, but I simply do not have enough energy to maintain healthy friendships. I have lost a lot of friends over the years for not being able to keep up with them. Sure, I have canceled plans may of times, not because I wanted to but because I had to.

Good friends are hard to find, and good friends that understand your limitations are much more difficult to come by. I kind of wish I had a friend that also shared my condition so that we could cancel plans on each other whenever we wanted and not feel guilty about it or at least know they understand. Imagine a friend that would not hold you up to every plan that you made with them, and understood that when you are having a bad day that it had nothing to do with them, that it was just a bad day. They wouldn't require that you chatted with them the whole time, and you could just sit in silence with them and be alright. They would know that "maybe you should exercise more", or "just be positive and it will go away" are not the things we want to hear. Imagine that friend. I want that friend, and I need that friend. No body that does not live with fibromyalgia can possibly even begin to understand the depths that the pain reaches. It reaches all parts of you; your entire body, your heart, your mind, and your soul. They are all in pain. Every aspect of me is in pain. I need someone who understands that as well as I do.

In the meantime, I pour my thoughts onto this blog, allowing it to relieve a fraction of the pain. Not only do I write to help myself, but I do hope that someone, somewhere feels they can relate to my pain. I do hope to help people with fibromyalgia and chronic pain whether it be just rambling on about things they can relate to, or being that friend that everyone with chronic pain needs. I find the community that is involved in fibromyalgia, chronic pain, and chronic fatigue to be quite inspiring and I love reading other people's stories. If anything, I hope there is one person out there that my ramblings have helped.

Until next time,

-Aimee