Sunday, May 13, 2012

Family and Fibro.

So I was going to take today to post about my graduation and Fibromyalgia Awareness Day, but a more pressing issue has come to light.

I hear a lot of stories from individuals with fibromyalgia whose family simply does not believe the pain the are in and view them as "lazy" or "dramatic" or that it's "all in their heads" - something to that extent.

And while I sympathize with them greatly, I'm still left with the question: What if you have an extremely supportive family that still somehow doesn't "get it"?

I'm fortunate to have such a loving and caring family as I do. We are a close little clan, and nothing they do for me goes unnoticed or unappreciated. But sometimes, despite all of the doctors visits and pharmacy trips, it seems as though they forget I have fibromyalgia.

Last night after graduation, my dad immediately had a discussion with me about my future. He also started suggesting I begin to get into all sorts of activities now that I'm done with school. Then he began asking me about my plans, as everyone else has been doing lately.

Up until 6 months ago, I had plans. I was a bartender making a good sum of money that went straight to my savings, which is now completely gone due to medical expenses. Bartending may not seem like that great of a job, but I was damn good at it. In fact, I was a natural. I caught on quick, could memorize a drink easily, and I was extremely accurate, quick on my feet, friendly to customers, and could whip up several drinks at a time just as fast, if not faster, than some of the seasoned bartenders I worked with. And I maintained all of these skills even in the most stressful and busy of nights. I chalk up this ability to my three years of having worked at Sonic Drive-In, where I was the master of fountain drinks.

Regardless, I loved my job. I loved it, I was good at it, and it payed well. I'd already been told I had arthritis, and many nights I could really feel it in my wrists, hands, and hips. I knew I wouldn't be able to bartend for 10+ years like many of my coworkers had, so I decided I would do it while I still could. In the past few years, I've made a name for myself as a bartender. And after graduation, I planned on bartending for maybe 5 years or so before going on to graduate school.

I also planned on running marathons, as I was an avid runner. But the first 12 mile marathon I signed up for which was to take place in November 2011, and which I'd been training for for over six months, I had to drop out a mere three days before. I was falling ill and growing sicker by the day. All of my hard work of running 5-6 days a week all summer in the hot, hot, humid  south Texas heat never came to fruition. I was devastated, but thought "Well, there's always next year and there's always more marathons."

What I didn't realize is that this wouldn't be a normal flu virus that simply needed to run its course.

But running and bartending weren't my only plans. I was also a weight lifter, a dancer, a gamer, a reader, a writer, a musician, an activist, and a volunteer, who was set on learning different languages and fighting styles from classes offered within my community. I had big plans for my post-graduation life, and I was thoroughly excited about them.

But then fibromyalgia happened. And I came to find that I had to give up many of these passions and aspirations. I don't even know if I could handle graduate school in time in the near or distant future.

So what are my plans? I don't know. I'd like to say my plans are simply postponed, but I don't see how I could ever live the hectic and active lifestyle I once had a mere six months ago. I've been a work-a-holic since I was sixteen, and I've never been happy at a job where I'm not constantly on my feet, busy, and moving and working long shifts. Shortly after having my first job, I soon had two simply because of a want rather than a need. I'd work the morning and day shift at Sonic and then go straight to Subway at night as an assistant manager on the weekend, and during the week I'd go to school, basketball practice, and switch up which job I went to at night. Might seem like hell to most, but I had a deep sense of pride in that sort of work.

Now I can barely handle sitting in two hour long classes four days a week without going straight to bed after.

So I don't know what I'm going to do now. I have no idea. But my parents don't seem to understand this.

They also don't understand why I'm uncomfortable with making plans for the immediate future. When I say I'm uncertain about whether or not I'll for sure be able to go somewhere on the weekend, they respond with a stern "Well why don't you know? Are you going to be there or not? It's a simple question." But it's not a simple question, not for a fibromyalgia patient. In fact, it's a very complicated question.

Yesterday I asked my parents several times about what we would be doing for Mother's Day. I asked in advance so that I would be able to schedule the proper time for rest, readying, and recovery. But they kept telling me "I don't know." Then this morning my mom decides she wants to go walk down main street to go antique shopping. That's difficult enough for me, but then they want me to be ready in less than an hour.

When I tell them it'll take me more than an hour, they scorn me for it. They act as though I'm being ungrateful and that I'm being selfish because I won't do what my mom wants to do on Mother's Day.

I've spent an ample amount of time trying to explain to them why I can't do certain things. I've explained that in the process of getting ready, I frequently have to take breaks. Hell, my dad and I share a bathroom together, he sees my shower chair every day. I've tried explaining that while some days my pain or exhaustion may be a four or five one day doesn't mean that my next day will be the same. On the contrary, my next day could even be up to a seven or eight or even possibly a nine. I don't know. I can't know. I won't know until I wake up in the morning. I can promise that no matter how I feel I'll try to push through it to the best of my ability, but I simply can't promise that I'll be successful in pushing through it with certainty.

I asked them yesterday what we would be doing and what time so that I could properly prepare for it and give myself enough time to be ready when needed. They had no answer for me. And now they don't understand why I can't get ready as quickly as they want me to.

And frankly, I don't feel like explaining this to them again. It stresses me out, it aggravates me, it makes me feel very badly about myself and it makes me feel guilty. And I don't understand why I have to keep explaining these things to them. I don't understand why they understand some things about Fibromyalgia but are completely clueless about others.

I graduated and moved half of my stuff out of my apartment yesterday.  I was up on my feet way more than normal, I was moving more than normal, and I was active way more than normal. Because of Mother's Day, I don't really have time to recover as I would usually need. My pain is about an eight today and despite that I'm willing to go through hell walking down main street, even with my cane, which I hate taking in public.

But this isn't enough for them. Instead I receive a bunch of condescending huffs and puffs and passive aggressive responses. Because I'm the lazy one. I'm the selfish one. I'm the inconsiderate one.

And with all they do for me, I feel immense guilt not only being unable to do what they want, but also for criticizing them for not understanding.

I don't know what to do. I'm at my wits end with this. I don't know why sometimes they understand and other times they don't. Do they forget I'm sick every single day? Do they confuse being happy with being healthy? Do they somewhere deep inside think I'm exaggerating my pain? Is it because I make efforts not to cry in front of them when I'm miserable somehow mislead them to think I'm fine? Is simply explaining it to them not enough?

I don't know and I don't know how to fix this. I don't want their sympathy, just their understanding. I don't want to be treated like I'm sick all of the time, but I also want them to respect my limitations. And  I definitely don't want this issue to be such a frequent occurrence as it is.

1 comment:

  1. Oh, I feel you on this one.

    My husband is my greatest champion, biggest fan, and out of anyone else in the world knows what I experience. But yet, sometimes he doesn't have a freakin' clue. It's so weird.

    I have decided that it's because it's an invisible illness coupled with the fact that NOBODY can ever truly get this complex, frustrating, and endlessly fluctuating condition unless they have it. They just can't.

    Hell, I have had this for nearly 20 years and sometimes I don't truly get my limitations- and push way beyond them or can't seem to synch my mind's wants with my body's needs. And I am intimately acquainted with this.

    Maybe the only way to bring them into the loop at times is to clearly break it down: "you want ____, but right now for me it means a, b, and c have to happen for me to participate the way you would like me to. I cannot do it the way I used to, it's not an act of will but of ability. So, is there a way we can meet in the middle?" I don't know how well that might be recieved, but it's non-threatening and clearly explains where you are at in the moment. Without getting mad or teary or feeling like why can't they just get it already??!

    I am pulling for you, and in a big way.

    Like all of us fibrogals and guys, you will find your own way in your own time. And that is what it will take to figure out your path within the parameters of your new life.

    It's just hard when those closest to us and the most supportive sometimes miss the boat on everything fibromyalgia entails. But, really, how the heck could they really without emphasizing the "sickness" part all the time (which I think may be way worse).

    Keep us posted. I will look forward to hearing how you are sorting this out with your caring, loving clan.