Posts Tagged ‘living with fibro’

fibro fog

March 15, 2010

One of the most annoying symptoms of fibromyalgia has been the “fibro fog” or “brain fog” that (I feel) is getting worse as time passes. Common symptoms of fibro fog include:

* short term memory loss
* difficulty remembering where you left something
* difficulty remembering plans
* difficulty with language, including trouble holding conversations, understanding conversations, and expressing thoughts
* difficulty finding the “right” word (written or spoken)
* trouble remembering simple numbers (addresses, home phone number, PINs, etc)
* difficulty following directions, instructions, and maps
* transposing or reversing letters and numbers
* trouble concentrating and focusing (particularly when it comes to multitasking)
* trouble retaining new information
* trouble recalling old information

I’m frustrated with this more than I’m frustrated by the physical symptoms, because I used to be proud of my ability to articulate and communicate, as well as my ability to multitask and utilize forethought. The written word is easier to manage, since I can spend as much time as I need to on a post, and go back to edit; however, conversations take on a whole new meaning, since I mix up words and can’t get words out, sometimes.

I can’t even imagine how annoying it must be to have a conversation with me where I’m asking you to “hand me that thing over there next to the other thing so I can do this thing with it.” I remember being irritated with my mom in the past when she’d say similar things. I can’t help but wonder if she had fibro fog while I was growing up (she often talks about aches and pains and poor sleep), but I always blamed it on her night shift work and poor communication skills. My poor mum.

Fibro fog has affected several of my favorite activities, from cooking and baking (because I lack the forethought to adapt recipes to make them my own, or create a new dish, and I often leave out or make mistakes with ingredients and steps when I try to follow a recipe to the letter), to writing (I get distracted quickly, after 200 words or so, and lose my train of thought when I try to leave myself notes and come back to the project), to crafts (I keep starting projects and forgetting them when I start something new: so far it’s been sewing and knitting I’m saddest about), to visiting new areas and trying new places (I can’t keep the places straight, and when I try to maintain a running list of “things I’d like to do,” I lose the list, even when it’s electronic). I really love playing Words With Friends on my iPhone (it’s like Scrabble), but I’m really not any good at high point words, or complex words. I figure it’s good brain exercise to play at all, and it’s fun (even when I’m getting my butt kicked), so I’ll just pretend like my brain isn’t turning to swiss cheese).

Fibro fog also affects important activities of daily living, like when it comes to remembering medication (I’ve forgotten I’ve already taken my Advair and take a second dose sometimes) and vitamins (time passes quickly, so I lose track of it), or I forget I’ve already put deodorant on and put it on a second (or third) time, or brush my teeth a second time.

Fibro fog is also why I haven’t posted much lately. I keep forgetting. Even when I have a great post idea, I’ll send myself an email or make a sticky note as a reminder, and then it gets buried under other emails or sticky notes, and then eventually I get overwhelmed and trash all the unanswered emails or sticky notes, and trash them all and start fresh. Rinse, lather, repeat.

The newest Really Annoying Habit I’ve got is that I get upset because I can’t find something that I *know* is nearby, I look all over a small area for it (like the coffee table or in the refrigerator) over and over again, and finally ask someone, exasperated, where the lost item is, only to find out it’s literally directly in front of me, next to or on top of something I distinctly remember seeing and acknowledging, but I swear that remote control was NOT THERE when I was looking furiously for it a second ago. My husband (and friend living with us) are extraordinarily patient, since they haven’t said a word about this Really Annoying Habit. Aren’t they wonderful? I’m so lucky. :)

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How are YOU?

October 12, 2009

I spend too much time on Twitter, probably, because it seems weird that I could get to know so many people in 140-character increments. But it’s turned out to be a good resource for news and networking for a lot of things, including fibromyalgia and other invisible illnesses and disabilities.

A frustration I deal with as a sick person is how to respond to the question, “How are you?” After all, it can be a loaded question to a person with a chronic illness, and for the most part the question isn’t meant to be answered with anything other than, “good, and you?” One of my favorite tweeters, @LilPecan, (who, to my knowledge, does not identify as a person with a disability) has mentioned how annoying it is to be asked the question, “How are you?” and I have to agree. It makes me giggle to hear that LilPecan and friends will greet each other with, “Good, and you?” beating the “how are you?” question to the punch.

But this does make a point. Even people who aren’t sick think this question is silly. As a sick person, I really don’t know how to answer it. When it’s asked by another chronic sickie or someone who understands what I’m going through, I’ll usually be honest (“I’m ouchy and tired, but had a great weekend, thanks for asking!”), but when it’s asked by someone who doesn’t fit either of those categories, I usually just say, “Okay. How are you?” I suppose it’s deceptive, but I really don’t think acquaintances are that interested in which body parts hurt worst on a given day, or how I just want to sleep for a week from fatigue (not depression, which is a common assumption), or how I really shouldn’t have done that extra load of laundry today.

It can also be kind of disheartening, because it’s a bit of a reminder, albeit a tiny one, that I’m always going to feel like shit, at least to some degree, and I’m never going to BE “good.” I might feel good emotionally, or I might have a good day physically, but I don’t think I’ll actually BE “good.” Or “fine.” Or “Great! Thanks for asking!”

Does anyone remember that George Carlin skit about being asked “how are you?” I can’t seem to find it anywhere, though. I’m a bad blogger.

I understand why people ask this and make small talk, but I’d still like to challenge us all to find a better way to open up discussions. Asking how I am conjures up thoughts of my health and my abilities, and while I will talk about those things if you’re genuinely interested, I’m smart enough to know that you *really* don’t want to hear the details of my boring fibro-filled life when you ask how I am. I’m okay with that. You don’t have to hear the gory details, and if I were you, I probably wouldn’t want to hear all the gory details myself. This shit ain’t fun. So perhaps you could ask me, or any chronically ill person in your life, “What’s new?” And if you’re actually interested in how we’re feeling, you could ask, “How are you feeling?”

If I do get asked “How are you?” which I do, because I have polite friends, I don’t get upset. But I do get tripped up, because I’m not sure if they’re asking to be nice, to start conversation, or because they actually want to know how I’m feeling that day. We can blame “fibro fog” for that confusion, I’m okay with that. But if you’d just be a little more specific, I sure would appreciate it, so I don’t talk your ear off when you just wanted to know if I enjoyed my breakfast. ;)