Comments on: Define "able."

By: AbominableSnowPickle

AbominableSnowPickle — Sat, 06 Mar 2010 00:41:43 +0000

I know it’s been a long time since you posted this, date-wise, but after reading this post I had to comment. I’m a 24 year-old woman who has been doing the fibromyalgia (among other things, for example: I also have a degenerative nerve disease called Small Fiber Neuropathy, which just compounds the pain issue) flamenco for about eight years now. Every day, almost every single person I talk to asks “how ARE you?” in that concerned, but caring sort of way. And while I appreciate that other people care about my well-being, it gets really annoying when it’s the first thing anyone asks you. I make quite an effort to be honest about how I am, but without that whole “Debbie Downer” thing…having been accused of that in the past. It’s a tricky balance to try and achieve.

But I’m rambling now. I just wanted to say how amazing this post is, because you’ve been able to explain the chronic pain and fatigue of Fibromyalgia in a clear manner that’s understandable to those who do not deal with this particular issue. I was amazed to read a description of what I have to deal with every day even if I’m not flaring. Thank you so much for your eloquent explanations!! My Mom and I are really close and she’s kind of my partner when I have to do health things. She doesn’t have pain like I do (minor Arthritis though), and though she really tries to understand what it’s like, I’ve never been able to explain it to her in a way that is really understandable. So I printed out this post and gave it to my Mom to read. Right now, she’s sitting at the kitchen table, reading.

Thanks so much for making this public/available. I just discovered this blog this afternoon and have been spending hours reading, it’s so intelligent and awesome. You are an amazing, strong woman and you made my day.

By: genderbitch

genderbitch — Sat, 21 Nov 2009 16:45:35 +0000

That analogy really helped get a good idea of this.

I wouldn’t say that I deal with chronic pain that piles in the same way that Fibro does, in that IBS organizes itself into specific attacks and during down time (usually before the attack, because there’s this same recharge time needed that puts me out of commission for some time after the attack), I’m usually doing fairly well. So it’s tough to grasp that continuous assault of the cache, I only get that in short bursts with reprieves that allow me to flush it almost fully (takes from a few hours to a day, depending on how acidic the well… the bowel movement was and how bad the intestinal spasms were).

The only time that this analogy comes close to describing what I experience (and those times, it describes it so horrifyingly well) is when I get an IBS attack chain, from extreme stress or hidden triggers in food that we weren’t aware of, right after a few others (stress chains have gone on for a long time, basically turning every meal for a few days into a nightmare, I’ve actually scaled down eating habits to one meal a day on the worst ones just to get a break from the pain).

I actually had this really geeky brain flip with the analogy at first, all I could think of was Star Trek starship shields. You fire loads of stuff at them, and it breaks part of the ship but takes the brunt of the hit (cache slowly fills, pain handling is higher), the shields recharge only when they aren’t getting hit and it’s wicked slow (cache slowly empties when not getting filled), and sometimes things happen or they get hit hard enough to knock them down (no recharge, ship gets pummeled)

On ability and disability… I’ve always thought of it as a difficulty scale. Disability makes things more difficult on a semi chronic to chronic basis. Things folk take for granted as actions that are viable, easy, or mundane, take more effort and planning for us than for those folk, those abled folk (who find these tasks mundane and easy). Some people would find reading a recipe and cooking dinner to be fairly simple (provided one knew how to cook), but for me, when I’m defocused as badly as I am most of the time from the ADD I can’t seem to hold the recipe list in my head. I’ve literally wandered off while getting the ingredients together, due to distraction, realized I was supposed to be cooking and got really upset at myself for it. These difficulties are frustrating, problematic, they crop up more than once, often over periods of time. They could be caused by pain, creating fog or stealing the energy needed to do certain things. And they could be as simple as not being able to go out with friends cuz one’s energy is sapped dry, or not being able to eat out at a restaurant because every option leads to horrible pain in the bathroom later. Or they could be as severe as literally not being able to operate one’s hands to put on articles of clothing because the pain is so high (or the fingers just won’t work, won’t grip).

It’s that spectrum of difficulty, trouble and problems, that inability to really take as mundane most things that are seen as mundane by the rest of society or really many things at all. That’s disability to me. The loss of taking some or all mundane activities for granted.

Sorry for the rambling comment. It was a good post, made me think a lot. XD

By: Nia

Nia — Sun, 23 Nov 2008 21:09:02 +0000

Hello,
I sent you an email yesterday partly about the way I fear my chronic pain will become disabling eventually…
I identify with this post partially because I have a low, manageable level of chronic pain. It means that I can have a quite functional, active life about 70% of the time.
I have found that there are different “colours” of pain. Some of it I can sort of “get used to”. They are in the scale you show. I’m used to the way my neck feels most of the time. Other sorts of pain I can’t get used to no matter how mild they are or how long they last. Sinus pain is like that.
Your idea of the pain memory or pain “cache” makes sense to me. In my case it is not as dramatic as yours, but yes, factors that cause pain can build up. Reading that made me think: I know that stretching empties the cache but pain and stress combined make me too tired to stretch and too sad to dance.
Not sleeping eight hours or so makes me unable to think. It doesn’t increase pain directly but it increases stress -> pain at some later date.
Stress, not a diagnosed disease, but simply, plainly being anxious, is the main cause of most of my pain. Most doctors consider this a good, and final, diagnose. “Relax, and don’t think so much” is the treatment.

By: denelian

denelian — Wed, 13 Aug 2008 10:32:19 +0000

i am late responding again, but thats because i am back i the hospital…

my biggest fatigue issue is that pain, in and of itself, causes fatigue. it also makes sleep harder to come by, and less restful. and causes depression, which ALSO contributes to fatigue. really, it all revolves around fatigue, and lack of sleep/lack of GOOD sleep, and societial expectations for sleep (not joking here… i have had jobs that only schedule me OFF for eight hours – as in i get off at say 2am and have to be back at 10 am. so, from the start there, i am only getting 6 hours of sleep that night. at MOST. and i need 10 to function properly. oh, i can get away with one short night… and then i pay for it for a week)

i really really like the cache explanation :D

By: Carisa

Carisa — Sun, 10 Aug 2008 05:39:09 +0000

I just found this post in a link from one of your guest blog entries at Feministe, hence my very late-to-the-party response. Still, I wanted to thank you for writing this. I found the “cache” metaphor really helpful in thinking about how I respond to pain, and your discussion of fatigue was spot-on. It makes me feel a bit more human to read someone else describing what I’ve been going through for 25 years but have always had such a hard time articulating. I might have to print this out and show it to the next doctor who asks me the “on a scale of one to ten” question or the “is the pain stabbing or burning or sharp…?” question. Thanks.

By: Feministe » Is it worth the risk?

Feministe » Is it worth the risk? — Thu, 07 Aug 2008 22:15:26 +0000

[...] this condition is already very vague and nebulous. You can’t always point to a clear line where your inability stops and unwillingness kicks in. You “can do” something now, but how will it affect you in the future? But outsiders [...]

By: three rivers fog » PSA: Do not try this at home.

three rivers fog » PSA: Do not try this at home. — Fri, 18 Jul 2008 00:16:23 +0000

[...] it, and it’s got more pain to kill, and it’s going to be less effective on the whole. Pain builds, so the longer you go without treatment, the worse you are when you get around to it, and the more [...]