Category Archives: Mental Health

Open Letter to Those Without CFS/Fibromyalgia

Someone was kind enough to compose an open letter to those without CFS and Fibromyalgia.

Please, please, please read this letter.  While many of the points don’t exactly fit my situation, most of the advice for those who care about people with CFS/FM is spot on.


Oh, Fibro Fog.

You are not being helpful by assaulting me full force on a day when I have to make a lot of phone calls.

Also, pain that only let me sleep from 6 am to 2 pm yesterday and not at all today?  Kindly go away.  Thaaat could be worsening the fog a bit.  :/


The extra pain has a distinct cause; on top of the stress of traveling and overextending myself for holiday visits (a planned expenditure of spoons, but a costly choice, nonetheless), my doctor-pharmacy-insurance hate triangle are Not Cooperating, so I have had the joy of skipping doses of my anti-spasmodic.  Yay!


Aw, WordPress gave me a surprise video of a slam dunk with inspirational music.

It knows I’m having a bad day… *sniffle*


Tumblr‘s still better.  Shhh.

Well, then.

Yeah, that sounds familiar.

In a fog.

I am currently battling three different fogs – fibro fog, pain fog and depression fog. Each of these is distinct, and something I’m pretty used to, but man, they’ve all lasted a few weeks and I’m getting tired of being unable to finish sentences. Since just about the only thing I can do is sit here and describe the fog, I’ll do a post on that. It’s one of the parts of FMS that is poorly understood by those outside the illness.

Fibro Fog
fibrofog has a really good description of that part of the fog I’m currently in here. I especially appreciate the fact that xie kept forgetting to bring the script for the comic home…so that xie could remember draw it. The best analogue I can think of for the word scrambling is when you wake up from a dream, and have something Really Important that you absolutely have to tell someone. As you start speaking and begin to wake up more fully, you start to realize that what you’re saying makes no sense, but what you have to say is so important that you have to keep trying and trying to communicate it. You don’t seem able to say it, but you know you should be able to. It is an extremely frustrated feeling, but I’m pretty sure Colin and I could win at a game of charades anytime. The other distressing aspect of fibro fog is that it makes it almost impossible to keep a to-do list effectively. Unless I pay bills the moment I get them, I completely forget. I forget to make phone calls setting up/cancelling doctor’s appointments. I forget everything that is not part of my daily routine (and some things that are). It is so incredibly frustrating.

Example, Last night at dinner:
E: *spills salsa on table* “Colin, could you please…um…um…”
C: *looks confused* “What do you need?”
E: *starts making wiping motions on the table, points at napkin dispenser*
C: “Do you want a napkin?”
E: *the most excited and sad nod you’ve seen in a while*

Pain Fog
Unlike Fibro Fog, Pain Fog seems to affect the logic center more than the verbal center. I know that there is something I can do to solve assorted problems, I just can’t figure out what. This tends to leave me sitting in my chair at a dead end of some route (especially in stores), unable to figure out how to maneuver out. Or, like last night:

E: “Colin, do we have anything softer than my blanket*? It’s scratching me.” *probably the softest thing we own
C: *asleep* “A robe? Go put on your robe.”
E: *honestly cannot figure out how to find her robe and put it on* “Please?”
C: *now awake and, frankly, grumpy – rolls out of bed, finds my robe, and helps me to put it on.*
E: “Oh, thank god.”

Depression Fog
Depression Fog is the most insidious because it works purely to isolate me in what feels like a protection mechanism. It is also the hardest to fight, since it convinces me that no one wants to be with me. The feeling is very much like having to push through a barrier before I can participate in a conversation…very difficult. I hate depression fog. It is currently making the adjustment to less daily social interaction So Much Worse. Fortunately, I do things like plan social events weeks ahead of time, so that I feel obligated to go and interact with people.

If you have any questions about the various Fogs associated with fibromyalgia, or if you would like to share a story of your own, feel free to leave a comment or email me.

I don’t have brain cancer!

Last week I went to the ER because of some vision problems.  They referred me to an ophthalmologist and a neurologist, and told me to get an MRI.  The ophthalmologist said that my optic nerves are “pristine”, and my MRI was normal (except for some hardening of the arteries due to the frequent inflammation that happens when my brain senses pain).  In the visit to the neurologist, I got to see all of the pictures of the MRI – it was pretty neat.  We scrolled up from the brain stem to the top of the head.  The parts with the eyes were a little disturbing – your eyes aren’t seen in an MRI, but the outlines are visible.  So, nothing to worry about – it looks like fibromyalgia/chronic fatigue syndrome stuff all around.

This week I am going in for memory testing*, electromyography and inner-ear testing.  I am not looking forward to the EMG at all – it can be quite painful depending on whether or not your nerves are functioning properly – but it will help to rule out anything the fibromyalgia might be hiding.

I apologize for the lack of updates recently.  The last month has been miserable, but I am hopeful that things will get better soon.  We are doubling the doses of gabapentin for muscle spasms/pain and sertraline for depression/fatigue.  I discovered last evening that massive amounts of coffee (I drank somewhere around 8 cups with dinner) combined with my current medications works amazingly well.  I was in the least pain I’ve been in for a couple of years, at least.  If anyone wants to mail me a coffeemaker for Christmas or my birthday, I will be very happy. (I just ordered a coffeemaker from Amazon, since it got me free shipping. I also ordered How To Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers. It is written by a Buddhist person with a disability, and I’ve heard very good things about it. A review will probably pop up here in a few weeks.)

*As soon as I remember to call and make an appointment, that is.

Too sick to work? Never! Ish. (Updated)

Between the pain and the chronic infections, I’ve passed out twice so far today. I got one of the tutors to cover the last half of my lab section after I passed out the second time (the first time was while I was getting on the bus to go to work), but I have to stay on campus until 8:30 or so to proctor an exam.

The doctor says that it’s not (very) contagious, just an over-reaction from my immune system, and there’s really nothing he can do, so there’s no real reason for me to go home.

That thought in and of itself is pretty toxic – I’m still stuck in this mindset that my comfort and health don’t matter as much as how they affect others. A sick day isn’t meant to make me feel better, it’s to prevent others from getting sick. I can tell myself over and over that it’s okay to take a day like this off, to go home and sleep and let someone else check my section into and out of the exam…but it doesn’t sink in. I know that this line of thought is harmful to me and to those around me, but I get so depressed when I fail to achieve even in the modest task which was my charge (but at least I didn’t steal any money or unrepentantly betray anyone’s trust? Sort of?).

So, I’m staying here in the library until 6:30, then going back to proctor.


Update: I should have gone home.  There really wasn’t anything to do besides check students into the exam.  It wouldn’t have added that much work to anyone else’s plate.  I also – Spoiler Alert! – made myself more sick by staying so late.  Pointless.

Dealing with the Disability Office, Medical Students, and, Oh, So Much More

Two doctors’ appointments today…one with TN (psych) and one with JS (phys). My primary objective was to get the letters I needed for the oh-so-offensively-named Disability Office signed by each. Everything else was just gravy.

TN wanted background. We got to…high school. She asks a lot of questions. Also, TN insisted on putting the letter on her letterhead…which took a good fifteen minutes of appointment time. Such is life.

JS was training a med student. Who didn’t read my chart before examining me. I was annoyed by how he kept interrupting me…then I figured out that he honestly thought that I must have been finished. Nope. JS also decided he needed to demonstrate the concept of fibromyalgia tender points to this student. Needless to say, I was not pleased.

Staying on the anti-spasmodic and the weird combo of anti-depressants, only one of which is being used to actually treat depression. Hooray for successful off-label use of generic drugs!

Exhausted. In pain. Ruing the purchase of gross pizza from Gino’s…never going back there again. Yuck. I’m sticking with Giordano’s and Lou Malnati’s, thanks. Normal night.

P.S.: Not entirely sure how I feel about the “recommended links”.  Feedback?

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