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

My Experiences with Acupunture for Chronic Pain

Having fibromyalgia, I will try almost anything to help relieve the pain. My most recent new trail has been with acupuncture. I found an amazing acupuncturist in my town, and she is most definitely worth the drive it takes to get to the complete opposite side of town, well, more or less in a completely different town from which I live. I had never tried acupuncture before and was not at all sure what to expect when I went in. I did a minimal amount of research after making my appointment, but did not really find anything besides hugely conflicting evidence which mostly pointed towards biased and unreliable data and studies. Mostly though, what I did read made me a bit skeptical going in, but I do try to keep an open mind towards anything and everything until I find out if it works for me or not. I will give you a basic rundown of what my experiences at the acupuncture clinic entailed.

Prior to my first visit I was given a decent amount of paperwork to fill out. This entailed the general stuff, of which you also probably know all about. You know, basic history and physical information, family history, allergies, etc. What set this paperwork aside was one sheet front to back with a survey of several questions broken into many different sections. Each question was numbered 1 to 5, 1 being worst, 5 being good. The questions went over almost every single thing I could think of. For once, I did not have to remember to bring a symptom up because it went over every single one of them, well almost all. It asked about bowel functions, urination, tinkling, bladder pain, constipation, diarrhea, fullness feelings, etc. It asked about headaches, migraines, mental fogging or slowing, neck pain, etc. One thing that I was almost relieved that it asked about was libido because this is always something I really do not want to have to bring up, nor do I even remember to bring it up. I did not have to here. It was asked about, as was just about everything else. It also asked about what goals I had in mind for my treatment. Of course, pain management was at the top of my list, as well as stress management and homeostasis.

When I arrived at my first appointment, I was pleasantly greeted as I removed my shoes. "Remove shoes at the door" it says. Relaxing really. Any place where shoes are not necessary is a good place. The acupuncturist, whom is a lovely, soft spoken, and gentle lady, welcomed me in and was eager to get me feeling better. She validated that the pain was real and that it was not all in my head first off. "Don't ever let anybody tell you what you are feeling is not real, it is there and it is very real". I suspect that she must suffer from chronic pain as well by this point. She was open and was very easy to talk to which is one of the most important things for me when it comes to picking any doctor. She listened to each of my complaints and asked about more. She was friendly, funny, and all around an amazing person. You know, one of those people that just feel like they are all around lovely.

We reviewed the paperwork I filled out and she explained that each section correlated with specific body systems. Just has I had learned throughout years of research, my adrenal glands were wore the heck out. My body does not seem to digest food well at all, and my kidneys and liver are functioning below par. Several others were brought up, but these were the most prominently obvious. Mind you; this particular acupuncturist is a board certified medical doctor whom practiced medicine for many years before deciding to start her own acupuncture clinic. I felt myself being able to trust her opinions on whatever she brought up.

After the initial consultation she had me undress in her absence, put on a medical gown, and lay face up on a heated table. It was pretty cozy. I was covered with a blanket so I was not exposed to the world. She proceeded to start the therapy, placing several needles throughout my body, several on my legs, arms, neck, ears, face, and hands. The needle sticks were not exactly painful, but not particularly comfortable either. Some of them I could not feel at all, while others did make me flinch a bit. The ones that were tender on insertion became unfeeling after a couple of minutes. Some points were immediately obvious that they were pressed into nerves. Again, not painful, but brought on a fullness feeling within that nerve running along the nerve pathway. Some muscles felt on the verge of a spasm after the needle insertion. Others felt just as they usually did. Some needles seemed to refer strange sensations to distant areas of my body.

She used some aromatherapies that seemed to have calming effects, and one of which in particular smelt so good that I kind of wanted to sneak the bottle of it home with me. So good in fact, that I went straight home and ordered some aromatherapies online for my own use. (I can't wait to get them.) I laid there for around 20 minutes with the music playing and mysterious aromas filling the room. I used this time for my meditation time and it worked out pretty well. Acupuncture is now officially also my meditation time since I cannot seem to find time for it anywhere else. After awhile, she came in and removed all of the needles with very minimal, almost no pain. She gave me some probiotics and some digestive enzymes to try out, and told me to come back in a week or two.

Right after the appointment I did not feel all that well from laying down midday (that is a weird thing with me, if I lay down for any point of time throughout the day, as soon as I get back up I feel AWEFUL with a major headache). So, it took me a little bit to get out of my haze of relaxation and meditation and for my body to come around, but after a few hours I felt much better. Maybe it was a placebo effect, maybe I just enjoyed the quiet time, but maybe it really was working. I tried not to get my hopes up too much. The needle insertion sights were tender into the night, and my nerves felt a little wound up, but overall I felt pretty good.  The next day I felt better than I had in quite some time, but attributed it to the nice weather. The day after that, it snowed and the weather was disgusting and fluctuating, but I still felt pretty good. I continued feeling better for several more days after that. After about a week the stress at work began to get to me and my health started to decline once again, but I will take 4 to 7 days of feeling pretty good anytime. Quite honestly, I would probably go again and again just to visit with my acupuncturist even if it did not work. That is how nice she is.

My second visit, I went in in a fairly crappy mood and in a good amount of pain. I was angry, irritated, and extremely stressed out after the week I had had. After the treatment I was in a daze again, and my body was stiff from laying on the table. I was in a considerate amount of pain after the treatment, and it took hours to wear off afterwards. The insertion sites were a little swollen and tender, but did not hurt too terribly bad. I started feeling better throughout the evening. The day after I felt pretty good but not excessively so. Certain muscles were so spastic that I could barely move them, but my headache was more tolerable which is what she focused on that appointment. I felt more calm and much less stressed out the next few days, so even just that made it worth it.

Overall, I need to do more research and have many more appointments before I can give an honest answer of whether acupuncture works for me or not, but so far I am having pretty decent results and will continue to go. Like I said before, it could be attributed to the placebo effect, or could simply be natural fluctuations that come along with fibromyalgia, but it could be working. I will let you know as I find out more about the mysteries of acupuncture. Until then,

May the Spoons be Ever in Your Favor,

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.

Blog Spotlight: Chronically Creative

I am spending some much needed alone time while the toddler is napping reading blogs. I stumbled across this post in my random browsing and it is one of the most heartfelt and relatable posts I have ever come across. I feel like I can relate to what Emily, Miss Chronically Creative, writes as she explains what it is like trying to maintain relationships with a chronic illness. Finding things that we can hope for during our most lonely periods is important. For me, it is reading blogs and now writing one. I find comfort in reading other people's stories, and it is one thing that keeps me going. Thank you Emily, if you are to find this. Your blog is very inspiring and I appreciate your honesty.

Check it out here:

Chronically Creative

http://www.chronicallycreative.net/2012/09/finding-hope-in-loneliness.html