a fibromyalgia resource
The lovely Annaham has a guest post up over at Shakesville: Mythbusting: Disability and Fear-Projection. It’s a great read, go check it out!
Sorry for the lack of posting here. I’d say i’d get around to it when i have energy to do so, but if that were the case, it would never happen… oh, wait. Heh.
‘Seven genetic types of ME’ found
Dr Jonathan Kerr, who led the St George’s research, said: “We must now determine what these sub-types represent, as they appear to be biologically meaningful, and discover their natural history and possibilities for treatment.”
Neil Abbot, of ME Research UK, which is organising the conference along with the Irish ME Trust, said: “The discovery of a ‘thumb-print’ for the illness would be the single greatest advance that could be made because, at the moment, diagnosis is on the basis of a set of vague symptoms association with other illnesses.
That right there? Is probable the best damn news i’ve heard all day week month.
No, not in the sense of “making it work”, but rather, obtaining (and trying to maintain) gainful employment while dealing with a chronic illness. So much easier said than done, i assure you.
Strange as it may sound, the fact that i can hold down a (desk) job has been almost a source of invalidation for me. Surely the fact that i could somehow make it to work more often than not means that my fibro isn’t that bad, right? Follow that logic a bit further and that makes it that much more likely that it’s all in my head, right? Or just not nearly as bad as i think it is.
I totally call bullshit on that one. Oh, it’s not like i’m digging ditches or anything – i sit at a desk and am not required to do any heavy lifting. Hell, i don’t have to get up unless i have to pee or go home. Having an awesome husband who works from home and helps take care of me certainly doesn’t hurt, either.
That being the case, i found this article fascinating: Working While Chronically Ill. I’d always been curious about the percentage of people with chronic illnesses who work, and was amazed by this bit:
According to Ms. Joffe, and to research conducted by the National Organization on Disability, only 32 percent of Americans with disabilities (ages 18 to 64) are working, but two thirds of those unemployed would rather be working.
Guh. Thirty-two percent? Daaaaaamn. I’m beating the odds like whoa. Some of that is planning (and Ben working at home is part of that plan), some of that is a stupidly high pain tolerance, and some of that is the sheer bull-headed stubbornness i inherited from my grandma.
Anecdote time: when my grandma was young (i forget what age), she fell and broke her ankle. She went to the hospital, and while she was there, a nurse said to her that it was okay for her to cry if she was in pain. “Will that make the pain stop?” she asked. The nurse said that it wouldn’t affect the pain, whereupon my grandma told her that if that was the case, she didn’t see the point in crying. Yeah. That’s just how we get down in my family.
There’s more stuff worth checking out in the article, including links to some rather helpful-looking sites that i haven’t had a chance to fully explore just yet.
I wanted to write a whole lot more on the subject, but my new meds* are making me woozy and really out of it, so this is all you get for now.
* – My new doc has put me on amitriptyline to try to help regulate my sleep cycles. It is helping, but also making me really sleepy all the time. Hopefully it’ll even out soon and i’ll manage to not nod off during the day.
Disabled vs. Challenged
A discussion between Lindsay and I this morning got some of the brainybits moving. We were talking about an article (she’ll post a link later, I’m not stealing that thunder) about a woman who is an advocate for people with chronic illnesses to find ways to stay in the workforce.
I am lucky enough (::knock on wood::) that my physical limitations have yet to lose me a job. That being said, they’ve come damned close, and that makes me wonder if it’s “fair” (a word that I really dislike using, as fair relates [in the Tao of Nix] to the universe’s constantly ebbing and flowing balance of positive and negative – by claiming something is “unfair,” I [at least partially] believe that you are making a judgment, something that is not your privilege to do, and are therefore creating an unnatural addition of negative) to have come so close to unemployment due to a physical condition that I can only attempt to keep in check. I didn’t CHOOSE to have Fibro, nor is there any sort of magical pill or exercise or surgery that I can have to fix the problem.
That brings us to the subject of this post. WAY too many people with chronic illnesses end up on disability. Why is this acceptable? 95% of the time, I am a valuable asset to any job. I’m an extremely hard worker, I’m honest, and as long as my body cooperates, I’m reliable. My needs for the occasional extra days off would be met, only if I were to label myself as “disabled,” something that I am simply not willing to do. I do NOT accept that I am disabled. If a label is required, I’m moderately challenged.
Where do we draw the line between useful and not? Why do we feel the need to have only one or the other? I don’t want cash or medical assistance from the government, but if I find myself unable to keep a job because my employer can’t (or is unwilling to) accept that my condition will sometimes keep me from being able to work, what other option do I have?
As I told Lindsay, I’m not sure where I’m going with all of this. Part of me is angry that something that I can’t control is in some ways held against me, but another part of me tells me what I tell other people when they offer sympathies: I’m SO grateful that I have legs to ache, I have joints to hurt. Sometimes we have to remember that for other people to take our illnesses seriously, we have to do the same from within.
For the past few months i’ve been dealing with a rather nasty case of piriformis syndrome, leading to pain and numbness from some rather pissed off sciatic nerves. Last night, the pain was so bad that i just couldn’t sleep at all. It’s been years since i’ve had pain that ferocious.
I’ve known a fair number of people with back pain, and one of the more common successful methods of relief/treatment involve traction – hanging (often upside-down) off the ground to take the pressure off of your spine. I’ve envied the people who could afford all the toys involved in this process – gravity boots and inversion tables.
Now, a pair of gravity boots (without the frame) will run you around $60 – not including the frame. The frame is only gouda-knows how much, depending on whether you get a free-standing frame or a bar to put at the top of a doorway. An inversion table goes for roughly $150-$350. And then you’ve got to figure out where to put all this stuff. The table requires no small amount of room/floor space; a doorway frame for some boots requires faith in architecture (hard to come by in older houses, eek).
But a pair of crutches? Only about $25 on amazon.com – and you can stow ‘em in a corner of your closet. Hell, if you’re as clumsy and accident-prone as i am, you may already have a pair lying around the house somewhere.
A few years ago, i had a rather unfortunate mishap and found myself on crutches for two (almost three) months. During that time, my chiropractor was amazed at how well my back was doing. Seems that the regular traction from swinging around on crutches really did wonders for my spine. It also was pretty awesome for my upper body strength, lol.
Just now, i just spent about five minutes swinging back and forth on my old crutches. After about two minutes of that, i felt a pop in about five different places on my back, all at once. I even got something of a head rush; yay for increased blood flow to the brain. Holy sweet cheeses and mother of gouda, i haven’t felt this good in i don’t know how long.
Now, time for anti-inflammatories and a good twenty minutes with an ice pack. I foresee that as being Incredibly Good Times.
From the article, Are Fibromyalgia Patients More Sensitive to Sound?:
Fibromyalgia is characterized by widespread tenderness, including sensitivity to touch. But do fibromyalgia patients also more sensitive to other stimuli, such as sound? In their article A Psychophysical Study of Auditory and Pressure Sensitivity in Patients With Fibromyalgia and Healthy Controls, researchers at the Chronic Pain and Fatigue Research Center at the University of Michigan, Ann Arbor, discuss their recent research into this question [Journal of Pain, 2008 Feb 14].
I know i haven’t mentioned it here lately (because, dur, this is a new blog), but y’all, i heart U of M like whoa.
This is one of those sensitivities i can remember occurring in early childhood. I can remember very specifically – the the sound of a hairbrush dropping on the bathroom tile, and the strange sensation of the sound actually rippling through me like a wave.
In my experience, this is not a matter of “all loud noises”, because there are times when i like loud noises. When i’m up and about, i seem to be most affected by sounds on the higher and lower ends – a high whistle and low rumbling bass will both hurt.
When i’m right on the verge of wakefulness and sleep, if there’s an unexpected noise (meaning no other preceding quieter noises hinted at an incoming louder noise), it literally feels like a shockwave traveling through my body.
Nix adds: For me, the sound things seems to be directly correlated to a flare-up (or even a particularly sensitive to everything day). The last flare-up I had ended 3 days ago, but even as of yesterday I was still finding myself turning down the radio in the car (when it’s usually quite the opposite, I am that girl), and especially while the flare-up was in high swing, I had to ask the boyfriend to not practice his bass guitar. I think this is another one of those things that probably hits (no pun intended…mostly) most Fibro people, but at different levels…just like every other aspect of it.
Being in a fair amount of pain, i figured i could use something to distract myself.
I tried to upgrade the blog that was here, only to find that i’d mucked something up something fierce. So instead, i just wiped out the last one altogether and set up something new. I’m not certain if i want to set it up as it was before (a pain journal that i eventually kinda forgot about and stopped paying attention to) or an actual blog about fibromyalgia with resources and such.
The latter sounds like an awful lot of work. And if i do anything along those lines, it won’t be on quite the same scale as i’ve got going on with BABble. Ye gods, i sure hope it never gets that big.
But i do kinda like the idea of having an actual page about fibromyalgia. I think that’s the insanity speaking.
(Originally posted at BABble.)
The following article came up under the feed i’d set up for a google search for “fibromyalgia”: Cyberbullies ‘just want to be mean’. Um. Wait, what? How are these two things related? So i made the mistake of clicking on the link. Le sigh. WHEN WILL I LEARN?! Apparently never.
After being diagnosed with fibromyalgia, Phyllis knew she would have to find another way to experience the world.
I personally hate these sorts of articles, the “local chronic pain patient’s personal story as source of inspiration/schadenfreude”, where they turn someone’s life into a fucking after-school special. Oh, and the “find another way to experience the world” line pissed me right the hell off, because they’re not talking about introspection, re-evaluation of priorities, or learning to appreciate the flowers. Oh, no: they’re talking about escapism.
So she logged on to Second Life, a 3-D virtual community, and created an avatar. She walked down golden streets, admired oceans and beaches and made new friends. She even bought a beautiful ball gown so she could dance again, something she couldn’t do in her real life with the crushing pain in her joints and muscles.
Okay, here’s where i admit that i can be rather harsh with certain perspectives. I am all about making sure that one’s health issues are adequately taken care of, which includes keeping track of one’s spoon supply. If doctors are no good, i am all about taking my own health into my own hands, and doing what i can to improve my quality of life. I am responsible for my own health and happiness.
I cannot support her sort of escapism. Having a chronic pain condition does not mean that i can no longer live my life. Sure, my life will look very different than that of most folks, but i’m not interested in letting my personhood be defined by my pain – physically or emotionally.
Three weeks into her virtual haven, the bullies descended.
“Are you a Christian?” one asked her. “Yes,” she said.
They sneered. They called her names. They pushed her down. Somehow, they obtained her personal information, threatened to come to her Hazel Green home and unleashed viruses on her computer.
So far, i have no reason to believe that fibromyalgia has anything really to do with this article, other than to serve as an excuse for her foray into online gaming. Because you can’t play games if you’re an adult…? In any case, the religious fighting that goes on online is nothing new – it occurs in every online medium i’ve ever taken part of. It’s more likely they’re targeting her because of that, not because of her having fibromyalgia. But yanno, let’s just pretend that sort of thing doesn’t happen and jump right back into the whole escapism thing:
She signed up for a free account on Second Life and created her avatar, a slender blonde with Barbie-like proportions and cascading curls.
*twitch*
Okay, maybe it’s just that i’m hormonal, or that it’s cold in here, or that i’m hungry… whatever the underlying cause of my current snarky/crankybits, i’d be tempted to mess with her. I wouldn’t, mind you. But i’d be lying if i said the temptation wasn’t there.
Phyllis often wakes up in the middle of the night with excruciating pain. She had to find something – anything – to take her mind off the pain.
Second Life isn’t just an escape, she said. It’s a part of her life now.
“I hardly have the energy to walk from one room to the other some days,” she said. “That’s why I try to keep my mind occupied.”
Just so you know? I didn’t skip all that much; this article really does jump around like a cricket on Red Bull.
Maybe part of the reason that quoted bit irritates the hell out of me is because i’ve been there? Maybe this is ties in with the old adage “the things we hate most about other people are the things we hate most about ourselves”? I’m willing to accept that. My pain wakes me up every night, every morning. Yes, i have used different games as forms of temporary escape – and i think back to those times and recognize that i was miserable underneath it all. Now i still play some of those games, but i do it for fun – not as a means of pretending my problems don’t exist.
So the story goes on about how she’s being griefed by these “cyberbullies”: everything from computer viruses to harassing phone calls, threats that they know where she lives, etc. And of course, the wrap-up of the article goes for the gold:
It’s hard, she said, but she can’t stop now. She needs to know who these people are, and she wants to know what they’re plotting next, if anything.
And the only way to do that is to keep signing on, and to keep hoping that today they’ll have something better to do.
“I don’t know what else they would do to me,” she said. “They’ve got everything.
“I’m going to die anyway, so I’m not afraid. Right now, I’m just waiting it out.”
*blink*
Has anyone told her that fibromyalgia is non-fatal? Pain in the ass yes, going to kill you no. Tear down your quality of life so you might want to speed up the process of death, only as much as you choose. It’s not like fibromyalgics have some sort of corner on the death market. Newsflash: we’re ALL going to die anyway.
The minute someone tells me they’re just “waiting out” their life? That’s the minute i’m less inclined to feel sorry for them and more inclined to tell them to fuck off. You want to be happy? Then fucking damn well DO IT. No, you may not have the same kind of life you had when you were a teenager – but let me clue you in to something: no one does. The closest parallel i can think of is the sad chap who was the star quarterback in high school and now the only thing that makes him less than miserable is watching football games.
Therapy exists for a reason, people.
(Originally posted at BABble.)
Part of being strong is knowing when to yield.
When Ben and i first started dating, i was very much in denial about my pain. Or rather, i knew i was in pain, but refused to let anyone help me. I was damned determined to do everything for myself – even when it caused more pain. I had Something To Prove. Usually, the end result was more pain. It was a pretty narsty cycle.
I had to develop code-words. I know this sounds silly, but i never claimed to be serious. Heh. Anyway, i would be sitting somewhere and not looking forward to the idea of getting up, even if i was really thirsty. The first few times, i would have to sit, swallow a few times (pride doesn’t go down so easy) and eventually say, “Sweetie? can you get me some water?… i’m… feeling, uh, <em>lazy</em>.”
And he’d look at me and know what i really meant. He didn’t mind the blatant lie because it was it was better than me being stubborn and hurting myself.
Asking for help can be one of the hardest things to do – especially for someone with chronic pain issues. A lot of the time, we already feel like we’re somehow less a person – pain is a very isolating thing. So there’s this need to prove to _____ (the world, our friends/family, our significant other, ourselves) that we ARE capable of Doing It Ourselves, Damnit.
Even when we’re not.
And you know what? It’s okay to not be capable at times. Part of being strong is accepting yourself in moments of weakness – be they physical, mental or emotional. <strong>Health is not a moral issue.</strong>
I am incredibly lucky to have such a wonderful husband who cares, understands, and is more than willing to get me a glass of water when i don’t have it in me to do it myself. I recognize that not everyone is as lucky.
There’s nothing wrong with asking for help. I cannot stress this enough. Asking for help is not a failure on your part.
A few years ago, when my husband and i moved into this house, his mom, dad and brother came down to help us get organized, clean, unpack, all that good stuff. Any excuse for a visit with the fam is good times, because they are very neat people. His brother has some chronic knee problems (which have gotten better after he found a doc who didn’t suck, yay!), and our driveway from hell was murder on his knees.
So after we were sitting and Bro had his legs up, i turned to him and said, “When you’re feeling poorly, do you want me to leave you alone? pretend nothing’s wrong? Do you want me to ask you if you need anything, or just assume that you’ll ask for it if you need it?” He stopped and stared at me, and after a minute he said, “Thank you. No one’s ever asked me that before.”
It’s okay to reach out for help, and it’s also okay to ask if someone else needs it, too. If you know someone with chronic pain issues, don’t assume anything: ask them how they want to be treated. Recognizing that we/they have a <em>choice</em> in the matter is a wonderful thing, and fosters communication.
(Originally posted at BABble.)
I saw the quote in the title over in the comments thread in one of Kate’s posts over at Shakesville.
I am fat. Having someone try to make me anorexic when i was 4 or 5 pretty much guaranteed that i’d have weight issues my entire life. That sort of metabolism-fucking at such an early age causes all sorts of health issues.
I am also sick. The symptoms of endometriosis started within a year of my first period (which happened when i was 13). They got worse and worse. My first surgery was when i was 19. The fibromyalgia symptoms started when i was 18. It started with inexplicable tendinitis in all of my toes. Next were the mysterious backaches that plague me to this day: they wake me up in the middle of the night, so painful that it hurts to breath. I woke up with one of those this morning, and will probably have one tomorrow and the day after. Almost every day, since i was a teenager. I will be 31 in a few weeks. You do the math.
My chiropractor is the only reason i am able to walk on a regular basis. Several years ago, i had to call in sick to work because i got up out of bed and my legs collapsed under me. I once had a twelve-day migraine because the vertebrae in my neck decided to twist and turn in a way that was impairing the flow of oxygen to my brain.
Some people have tried to say that i simply have no pain tolerance. To them i respond: when you can sit in the dentist’s chair and not require Novocaine, you let me know. Until then, STFU and get the hell off my damn lawn.
I am not lazy. As a child, i was more sedentary than my brother (who lived for soccer practice), but i was still active. I used to ride my bike all over Chicago. I rode my bike to and from school – 16 miles round trip. Occasionally, i walked home from school – 8 miles. It wasn’t like i’d spent all my bus fare on choccies and chips: i rode my bike and walked because i wanted to. I had adequate reason to be an angry child, and whenever i was angry (which was often), i would get on my bike to blow off the steam.
So in the narrow-minded notion of “fat = sick or lazy”, it’s because i’m sick. Does that give me a “Get Out Of Fat Free” card? Does that mean if i wear a hat with a blinking neon sign that says “Fat Due To Sick”, people will stop looking at me as if i had no right to exist? Does that mean i’m suddenly worthy of respect?
For that matter: why is there shame associated with being sick? As if it’s a fucking choice? I chose this? Who in their right mind would choose this? For that matter, why on earth should i be ashamed? If anything, the amount of pain i put up with on a daily basis without giving in to it is something people have admired in the past. I would tell you to walk a mile in my shoes, but if you were in my shoes you wouldn’t be able to handle the pain that comes with that mile.
I’m not on drugs, i don’t drink, and i haven’t killed myself. I’ve considered all of the above as viable means of escaping this pain in the past, but not anymore. I like who i am, fat and pain and all. I am a good person who rescues stray cats and dogs. I am a loving and supportive wife. I am a good daughter. I hold down a regular 8-5 job, 5 days a week. I am a responsible member of society who pays her bills and taxes, does not participate in illegal acts, bathes regularly, has healthy relationships with friends and family, and i do NOT deserve your arrogant scorn or your condescending pity.
If anything, people who feel this way about me are the ones to be scorned and pitied for taking their mobility and freedom from pain for granted.
I am fat. I am sick. Neither of them are a valid excuse for treating me as less than human.