Butterfly Cauldron

Friday, May 01, 2009

The sharks are here every day

Working full-time with FMS and Lupus is sometimes agony for me. I am often exhausted and in serious pain. That pain causes me to be short with people, or to be slow to volunteer to help out with projects around the office. The pain is sometimes so severe, that it gets noted on my evaluations that I seem unenthusiastic or unwilling to help out. That's not true, of course. The truth is that I simply don't have the strength or energy to do more than come to work and sit at my desk all day. Some days, even sitting for long periods of time is too difficult for me.

In order to control the pain, I take pain killers. They kill the pain, but they usually make me a bit loopy and unfocused. (In fact, I've had to take medication today, so this post may be a bit disjointed. Sorry about that.) Since I work as an editor, loopy and unfocused is not a good thing to be.

In the past, I've had to take extremely strong meds at fairly precise intervals. Even though I work full-time, I have limited sick/vacation days. So the week I was on the drugs that made me, essentially, stoned, I had to go to work. Luckily I had an understanding boss and co-workers who looked out for me -- but I let some serious errors get through because I just couldn't catch them in my drugged state.

To the outside world -- which, let's face it, is pretty much everyone -- I don't look like a person with a disability. I don't look like a person who requires strong medications to successfully get out of bed and make it through the day sometimes. Most people look at me, I don't look sick, so they assume that behaviour -- the occasional snappishness, the apparent unwillingness to be a team player, the failure to catch errors -- is due to either laziness, incompetence or apathy. None of those things are true, but that is often what people think when they see me.

They can't see the thwarted ambition. They can't see the life plan thrown irrevocably off track. I am 34 years old. I finished my Masters program when I was 24. I had planned on getting my Doctorate by 27 -- a completely doable plan and considering how dedicated and in love with my research I was, I would probably have finished early. By my age now, I should be safely settled in a teaching job somewhere. I had always dreamed of teaching at a small, liberal arts college, probably somewhere in New England or the Northwest. I love the coasts, always been drawn that way.

I had hopes of being tenure track by now. I had dreams of owning my own home by now, of being settled and an adult by now. Instead, my disability has trapped me in a sort of perpetual thwarted adolescence -- yes, I work full-time. But the work I am able to do does not pay well and I am barely able to pay my bills. Many able-bodied people are in the same situation. But they have something I don't -- the ability to move upward. If a job requires 60 hours a week? Well, they may not like it, but they know they can do it for awhile. Me? I can't. I absolutely cannot. I have the mental ability to work at a much, much higher level than I am now. I have the education, I have the intelligence, I have the drive -- but I don't have the physical ability anymore.

It drives me crazy sometimes, feeling like a failure. In my head, I know that I'm not. I know that I am not the person other people see. I know that I am not lazy or apathetic or incompetent. I know I'm not a chronic whiner when I say I'm tired.

Other people don't understand how much of my money goes to pay for medication. I take six different medications each day. Even with insurance, that's a couple hundred a month. Now add in the cost for doctor's visits -- a GP, a chiropractor, a rheumatologist, a neurologist and a pulminologist. Tack on the cost for lab work -- regular blood work, the occasional MRI and neurological work up. That's thousands of dollars a year, on a salary of less than 30K.

This disability is a heavy, hard thing to tackle. Until very recently, I've been dealing with it on my own. Do you know how sad it is to go to doctor's visit after visit alone? Do you know how utterly desolate you feel sitting in a waiting room, waiting for an MRI, looking at everyone else in the room and noticing that they all have people with them? Supporting them? And you're sitting there, alone again, praying that the MRI comes out clean, that there isn't any damage on your brain, that you really are just having stupidly complicated migraines and aren't having seizures like the doctors suspect?

It is lonely and isolating. You lose friends, your family can't understand. Everyone just seems to fade away.

And still -- up every morning, off to work with bones that feel like concrete and muscles that are stretch and sore. My mother asked me once what the pain felt like and I told her -- it feels like my spine has turned to broken glass and is grinding against my spinal cord. I'm afraid to move because it always feels like I'm about to be cut in half. She doesn't appreciate my language. She thinks I'm being dramatic. But she asked and it's true.

I'm always struggling, in some way, with reconciling the image I have/had of myself and the reality of my situation. I fight the urge to blame myself, to give in to the delusion that I'm just imaging things, that they're not as bad as they seem, that I don't really hurt this much, it's all in my mind. Now that I'm getting married, I have to fight my instincts to do everything on my own. I fight the urge to put on my public face, to pretend that I can do all the housework. That I can do all the shopping. That I'm feeling well enough to go out. It's instinct to keep quiet about how bad a day I'm having. It's hard to ask for help. It's harder to accept help.

And I'm afraid to give into the hope that my life will get better. I've been slapped down so long, that I'm almost afraid to dream of the day when I'll be able to stop working full-time. We have the plan -- as soon as Emmy has a full-time job with enough salary and benefits, I stop working. I keep my part-time job teaching online or I start my own freelance editing business. But I don't work full-time anymore. I don't have to go to work stoned on prescription drugs because I don't have sick time or disability to take. I don't have to deal with people thinking I'm lazy because I only take on as many projects as I can reasonably handle. We have that plan. And I can see it is a real possibility. It's something I can actually have, a life I could love, with a partner I love. And I want it and I reach for it, but I'm scared it will disappear like so many other plans I've had even as I believe it will happen.

Disability isn't just about the physical. It isn't just about difficultly walking or difficulty finding reasonable accommodation. It goes deeper and hits harder. And it can happen to anyone, at any time. You could be a first year Master's student, with a clear 5 year plan and perfect health and wake up one morning in pain, unable to move. It happens everyday. And no one wants to think about it, no one wants to talk about it, no one wants to admit it's real. And by denying it, you give it power. By denying it, you make it shameful. By denying it, you create an atmosphere where you have to work full-time, with your shattered glass spine, in order to pay your medical bills and everyone thinks you're lazy or incompetent or apathetic.

(BTW -- I always imagine my FMS/Lupus as a school of sharks swimming around my body. Hence the title.)


posted by Zan at 12:26 PM


We has a plan, and a paddle to bash the sharks in the nose. Love you soooo xx

1:25 AM  

Wow, that's such an honest and from the heart post... I wish everyone who has ever said "are you sure it's not in your head?" could read it.

It really sucks big time that you cannot get healthcare that is free. It is ridiculous and so very wrong that you have to wear yourself out working full time just in order to survive.

It's frightening to hope for things to get better and for plans to work out some times especially in the face of many prior disappointments but it does happen and you deserve it.

1:38 AM  

I'm not feeling very coherent this morning, but I promise you I was nodding in agreement right through that post!

1:50 AM  

I really appreciate your honesty in this post. Very well said. Thank you for telling your story.

2:49 AM  

You explain the losses than come with chronic illnesses so well... Great post. I really hope you are able to stop working full time soon.

12:53 PM  

This expresses the difficulties of working with a disability quite well. I've had to struggle with the perception of being lazy or unwilling to help too.

3:22 PM  

I followed the link here from Emily's page, thank you for writing this.

I'll cross my fingers and such that things work out with you being able to stop working full time.

3:51 PM  

Wow... I could relate so much to all of this. It almost made me cry, honestly, and it was a little hard to read because it's all so new to me. But I'm glad I read it--and glad to know that I'm not the only one who suddenly has to survive with this.

8:24 PM  

"I know I'm not a chronic whiner when I say I'm tired."

See the thing that gets me is that I don't want to complain all the time. I know people just don't know how to deal with that and don't want to hear it, BUT with an invisible disability if I don't tell people how I am feeling they assume I am fine and that if I am not doing the things that are expected or that they want me to do that I am a lazy slacker. So I feel like its the choice between being seen as the chronic whiner or lazy slacker.

This country needs universal health care. My husband was miserable at his job in Wisconsin, but he couldn't quit because I needed his insurance. Like you I have all kinds of doctors appointments, tests, treatments, and meds. There is no way we could afford it without insurance unless we win the lottery. I worry for you and Em being in this position someday. What if things are miserable at work for Em? She can't quit because you need the insurance, just like me and my husband. That's why insurance should not be tied to a job, because really health care is a human right, no one should be denied it, and it should be provided by our government in the same way that Medicare is available to the elderly.

1:35 AM  

I try not to think about Emmy being miserable at her job. I pray that doesn't happen, but I know it could. If it does...well, we'll figure out a way out of that ditch if we get there. With us getting married, the possiblity of me getting diability goes right out the window -- and it never really was a big possiblity anyway. *sigh* I TOTALLY agree that we should have universal healthcare. As the only first world country that doesn't have it...well, what does that say about us? Insurance should NOT be tied to work at all. It just makes NO sense. If it wasn't I wouldn't have to work fulltime like this. I could stick with my parttime job, where I can make as much money as I want, depending on how many classes I teach and I can do the work from ANYWHERE at ANYTIME. So I could make my insomnia work FOR me ;)

8:48 AM  

Like you, I do hope Em finds a job she loves. But even after that I hope we get universal healthcare!

The funny part about our story is that my husband works for UPS, so we could always transfer, but we didn't because it was only a couple hours away from where he grew up, so his family and friends were there. And the kids had grown up there, that's where they had roots. The reason we moved, was because of ME. My husband was so miserable at work that he brought it home and I couldn't stand it anymore and threatened to divorce him. I told him I was done with Wisconsin and moving out east. I didn't know what I was supposed to do without insurance, but it was so bad I couldn't live like that anymore. Lucky for both of us (and the kids) he decided to come along for the ride, and he is happy with his work in NH and I finally got him to see a doctor and we found out that he had undiagnosed clinical depression. He's on meds for that and there is so much less anxiety, brooding, and anger from him. He's finally happy, well, except for the part where his wife is in pain most of the day.

10:14 AM  

The more everyone comes out and talks honestly, the less people will say "you don't look like someone with ____" because physical variations will become commonplace and people will (hopefully) stop saying/thinking that stuff. (((Zan)))

6:37 PM  

True and moving. Just exactly on point about so much of what I feel or go through every day. I'm sorry it has to be that way for you, but boy am I glad that there are people who understand.

Screw the sharks.

12:32 PM  

This isn't really about BADD, but have you heard about low dose naltrexone? It's a very effective treatment for both autoimmune diseases and fibromyalgia. I don't have either one, but I have CFS/ME, and I'm one of the tens of thousands of people who can attest to the benefits of this safe and inexpensive prescription drug. Please at least look into this suggestion.

9:11 AM  

Your posting really hit me in the gut, especially after having a conversation with one of my docs the other day about how I can keep going toward a full time job when it seems my body is telling me something else...

We do need a better health care system and better education for the general public, family and friends about the consequences of living with a disability in a culture that doesn't value difference.

You really hit home when you described sitting alone in waiting rooms for the umpteenth time...

I wish I could have a do-able plan, too...

All the best...

6:17 AM  

(Hugs Zan)

You know, I just read Elisabeth Wurtzel's extended whine about how her life is over because she's not stunning any more (sadly she basically did say that). I'd love to make her read this, maybe she'd get some perspective.

I'm glad that at least when Emily is there permanently things might get a little easier, but still, it sucks to just plain not be able to do the things that you want to do.

Also agree with Donna - we need universal health care. You shouldn't have to pay for those meds. We shouldn't have situations where some people can't even get the meds because they can't afford them.

1:24 AM  

xxooxxx ((Zan))

12:27 PM  

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