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.

HUGS; 6 ways To Avoid Them

This is typically what I think to myself when people try to hug me. Not because I don't like hugs, but because they stinking HURT! Especially when they squeeze just a little bit...... and it feels like they are the Hulk and they are crushing every bone in your body with little effort. There are a few things you can do to avoid hugs:

1. Awkwardly pull back into a half-ass handshake, and act like that was what you were going for the whole time.

2. Point into space and claim you saw aliens. "Hey, look over there!"

3. Claim you are terrified of germs. "Eww, gross, don't touch me."

 

4. Act so completely insane that the person decides not to hug you.

5. Run away, hide, or escape.

 



6. Flat out deny the hug.

 

 

-Aimee