Today is Colin and my fraternity’s anniversary celebration, which I have been responsible for planning. We are meeting at Frank Reed Horton Way (named after our founder somehow? I’m hoping to get that story tonight…), then heading on to Giordano’s.
Giordano’s is delicious, delicious pizza. The most exciting thing I’ve eaten all week was cheese and crackers last night. I also had juice.
I don’t care, I’m getting sick. Bring on the pizza.
Apparently, I don’t get to digest things this week.
And it’s just a part of fibromyalgia, so I can expect this in the future.
Also, there’s nothing the doctor can do about it, except hook me up to an IV if it goes on for a really long time.
Yay.
P.S.: Look at how not-gross this post is. You’re welcome.
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.
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. 
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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!
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Aw, WordPress gave me a surprise video of a slam dunk with inspirational music.
It knows I’m having a bad day… *sniffle*
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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.
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.
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.
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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.
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:
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.
I was wondering the other day about how I could be on so many medications and not notice any of the side effects. Then, it hit me: I am so hesitant to add medications – every new piece you add to the giant, convoluted chemical system stresses that system until the system attains a new equilibrium – that I have to be absolutely miserable to do so.
This is especially true in regards to anti-depressants. Like many suffering from depression in the U.S., I waited way to long to get help because of the strong stigma against mental health care here. I couldn’t get out of bed most days because of the depression; Colin literally took me to some of my appointments with the on-campus counselor. As soon as I started sertraline (prescribed by my GP, because I went in for a check-up and just sat there, quietly and ashamedly weeping, when he asked me how I was doing), I felt so incredibly alive again. I know that I gained some weight, but I hadn’t really eaten for a few months, so that was expected and good. I have no idea if my sex drive was at all affected, because I wasn’t exactly having much sex while I couldn’t move.
Each of my other medications has had a similar effect. The only bad thing I’ve experienced as a direct result of medication that comes to mind right now is that most of the weight I gained went to my chest…and bras are expensive. I think I can live with that. Another, more serious, note is that I can’t take most of my medications if I ever get pregnant. My spouse and I are very careful, and are excited about the idea of adoption, but what will happen if my chemical birth control and condoms fail? There is a very fine line between what would be healthy for a fetus – only the meds that keep you alive – and what is healthy for me…it would be an interesting and frightening line to walk. Let’s just hope I don’t have to think about that. 😀
I should probably get around to the reason I thought about this post. One condition – a slight, usually benign arrhythmia – has gone away as a result of gabapentin, a medication for my pain that operates as an anti-seizure medication. It didn’t even occur to me that gabapentin would solve my PVCs…but when I noticed that the palpitations had stopped, I tried caffeine – no PVCs! Then, JS gave me a prescription of Percocet (a tiny dose of oxycodone + a massive dose of tylenol) instead of my normal plain oxycodone; I was hesitant, but it worked! No palpitations, no skipped heartbeats, and best of all, pain relief. This is the least pain I’ve experienced for a month. I’m probably around a 2 or 3 on the pain scale posted earlier, which is certainly fine by me.
I know that I am very lucky to have had this experience with my medication so far. I know that I am extremely fortunate to have found a combination of treatments that works well for me at all, much less to have avoided some of the more painful side effects. To anyone out there experiencing these problems, I wish you luck. I know it’s a terrible process, and one that may never get you to your goal. I thought I would never be at my pain goal of a 2 or 3 again just a few months ago. I won’t tell you to keep hoping, or to keep searching for something that works. That’s your choice – do what makes you happy. That’s really what matters here.
Take a deep breath. 