Tag 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: *ON FIRE AND BEING STABBED BY KNIVES WHATISTHISWHY*
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.


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.


Transitioning to Disability

Over the last couple of months, my disability has worsened severely.  Word from my doctors is that, even in the best case scenario, I will never get better, just not worse.  Not very encouraging, but that’s the way it is.  This news has several impacts on my life plans; primarily, that I will never be able to work a forty-hour week or to do work requiring manual dexterity.  There go my plans of being a professor.

So, welcome to the World of New Plans.  New Plans that don’t include grad school – what’s the point if the only reason I went to grad school was to be a professor?  This quarter was overwhelming enough that I have decided finish out the quarter as a teaching assistant, but not as a student.  I’ve talked to someone in the department administration who is going to help me to keep getting paid, even though I’m only TAing and not going to class.  It involves a bit of subterfuge, but I am comfortable with that.

I was curious about how my time is spent compared to someone without a disability.  The results were pretty shocking:

  • After considering time needed for sleep, for my commute, and a frankly generous estimation of time spent in the doctor’s office and/or pharmacy, a TAB in my situation would have about 105 hours.  I have about 46 hours.  This is before considering a work-week.  46/105 is 44%.
  • After a forty-hour work-week, a TAB would have about 65 hours.  I have 6.  6/65 is 9%.
  • If instead I worked a twenty-hour work-week, I would have 26 hours to a TAB’s 65.  26/65 is 40%.  That’s a number I’m willing to deal with.

I am meeting with my therapist/social worker TN this afternoon.  We will discuss the best way to go about the mountain of paperwork and hostility that is the application for disability benefits.  Fortunately, I have paid into the system just long enough to be covered.  What happens to people who have been disabled since childhood?

This decision has been an excruciating one to make.  I feel such a weird combination of failure and relief; I may fail at having a normal life, but I will finally be able to help with dinner, dishes, or laundry.  My husband and I will be under so much less stress, even when we transition from full-time pay to half-time pay at the end of this quarter.  There are a lot of things that have to go right for this to work, but we have enough savings to get through most of the negative outcomes.  The others, no amount of savings could help us, so I’m not going to kick myself over those.


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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