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Emotional Dragon

So apparently it takes being a hot mess to get me back here. I’m feeling pretty raw, and this seemed like the right place to go.

For context, the last 6 or so weeks have been pretty great, especially emotionally. I did a medication change in January that’s worked wonders. I sleep well, I don’t have nightmares, I rarely have daytime sleepiness, or even early-evening sleepiness. My mood has been rock-solid: no mania, no depression, and no disproportionately anxious responses. Simply put, my mental health has never been better.

Tonight I had a bit of a meltdown. It started with disproportionate anger to what I would have thought in logical terms to be a fairly minor irritant involving an online friendly acquaintance. Then I started getting distressed about feeling this anger. I also remembered a couple times this morning I felt flashes of anger at people who were just doing their jobs, and the issues were, again, small (I did not take it out on them, don’t worry).

Jalan and I came up to snuggle, since I wasn’t doing well. We talked about this. For more context, anger is generally a no-go for me. It wasn’t permitted in my family of origin. It largely didn’t exist for me in the first half of my life. Didn’t exist as a conscious feeling, that is. “Anger In,” the personality psychologists call it. Combined with a hefty dose of repression and the superego from hell.

Then I started feeling fearful. Not about the anger-provoking irritants. But about possibly falling back into a CFS relapse of unpredictable duration. I had a long, really severe one in the Fall, but have feeling mostly myself since around mid-December. Sometimes I’ve been more energetic than I’ve felt since CFS first hit three years ago. Still, it didn’t seem fair that it might be coming around again. When “fair” has fuck-all to do with this.

As the next step, I just started crying.

I looked back at the week. Monday and Tuesday had a lot of stuff going on. Unusual financial stresses, veterinarian visits (not even for the pet that’s dying of cancer), out and active longer hours than my norm, and still got a shit-ton of to-do’s checked off.

After all that, Wednesday was a total loss. I was up maybe an hour before going back to bed. Thursday, I got a couple of hours’ work done in the morning, then had to stop. Headache came on, not responsive to the usual remedies (ibuprofen, water, caffeine). I ultimately took a half-tablet of Percocet to be able to sleep. Today, I spent over two hours at the urologist for mysterious problems (not cancer). Nothing today was conclusive, so set up a pelvic CT for late April. I’ve had the problem for 30 years. I can wait another 6 weeks. Surgery is a possibility, depending on what they find. But after that, I did not have anything like the energy to work.

In short, I pushed hard Monday and Tuesday, dealt with some unusual stressors, and CFS has been kicking my ass since then. Oh, and I had an episode of autonomic dysregulation this afternoon, the occurrence of which is (imperfectly) correlated with CFS flares. But extra fun.

And tonight, it just all came crashing down. Exhaustion, anger, fear, sadness. Too much.

 

 

 
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Posted by on March 11, 2016 in Health

 

Flunked my sleep study

I flunked my sleep study :(. Apparently some degree of sleep apnea, which surprised me–and Jalan, who sleeps next to me. That meant I couldn’t do the daytime test, but apnea is more easily treated than narcolepsy.

Last time I had a CPAP, I couldn’t tolerate it, but there are probably improvements since then. They’re a PITA, but if it helps daytime sleepiness, then worth it. Maybe we can get a mask that can be modified with locking straps…

I don’t know the degree of apnea until I see the relevant neurologist.

 
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Posted by on January 27, 2015 in Health

 

Long Health Update (two steps back, one step forward)

I’ve been slow to update while things with my health have been changing rapidly. So here’s a big update.

tl;dr: CFS symptoms have been worsening, there have been other unpleasantnesses, but they have no serious long-term consequences. There are also new diagnostics going.


The good news about things I hadn’t talked about: The vertigo is receding and the chest pains are almost certainly reflux, not new heart problems. Not that the return of reflux is itself good news, but could be worse.

The bigger good news is that there are new diagnostic avenues. I’ve got an aggressive new neurologist who wants to be sure whether there’s anything underlying the Bastard that might result in treatment (novel idea!) or even different management.

More good news is that I’m calm about all of this. There have been ups and downs on that, but I’m taking them REALLY well, if I do say so.

And I’ve got a spectacular healthcare team here.

About two months ago, I hit a major relapse in CFS symptoms. It’s been as bad as it ever was, even at the worst of the diagnostic year. That’s been in a downward feedback loop with cardiovascular fitness, as I’m even more sedentary. And gaining weight again, which contributes to the vicious cycle. There was a two-week depressive swing in December, and those are quite rare these days and don’t usually last so long.

Two weeks ago, I went to the ER with chest pains.

NB Never have a medical emergency when flu is epidemic.

We were there for about 30 hours without ever getting admitted — finally got a bed in the observation unit at 2am, having been in the ER since 9:30 the previous morning. Long story short, it appears to be a resurgence of GERD (acid reflux). I saw my cardiologist (who seems to think I’m really interesting) yesterday for the ER followup, and there’s nothing we didn’t already know about with my heart. He also said I can start building up again on cardio, which I’d been reluctant to do before that appointment.

Now, a month ago, I’d seen the new neurologist. The original point was to follow up on the Mayo’s suggestion that there might be an underlying mitochondrial disorder. The test for that is a muscle biopsy, which they couldn’t do while I was on anti-platelet meds after the stent. There was no rush, as it’s not treatable either, but the management in terms of things like exercise might be different. The neurologist thinks mito is possible, but has a preferred hypothesis of a combination of narcolepsy (or similar sleeping disorder) and small fiber (autonomic) neuropathy.

So, since then, I’ve had yet another EMG and nerve conduction study, which failed, again, to find any motor or sensory neuropathies. He also took two samples for a skin biopsy, which are currently at an out-of-state lab being tested for the small-fiber neuropathy. I have a sleep study scheduled tonight and a multiple sleep latency study tomorrow — basically, I’ll be there 9pm to 4pm. Friday, I see the neurosurgeon to set up the muscle biopsy. It’s done at a hospital under twilight drugs, and also goes to an out-of-state lab.

In mid-February I meet with the intervention cardiologist to discuss repairing the congenital problems in my coronary and pulmonary arteries. There’s no new urgency to this, but Jalan’s vacation schedule is such that this June is the ideal time for me to have recovery. They might be able to do it via catheter, which is a trivial recovery. I’ve been down that road more than once. If not, they go between ribs, which is not trivial. But the cardiologist told me this repair does not require cracking the chest, which is great news.

Oh, and randomly, I’ve had vertigo since Thursday morning. Urgent care doc said there was an inner-ear irritation, but it appears to be nothing persistent. I just haven’t driven, and showered when Jalan’s been home. It seems to be mostly over.

After all that, there’s room for getting back on an upward trajectory, if it just means I climb the stairs for cardio on the cold, gray days while all the tests are going. This has been an unusually dismal Winter for where we are, but we’ve got a broad-spectrum light set up in our room, which is helping a great deal.

 
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Posted by on January 25, 2015 in Health

 

Health updatery, with big things ahead

I’m complaining on Twitter about having a post-air-travel cold, so that made me think to post an update here.

The Chronic Fatigue Syndrome is, overall, pretty well managed. ‘m getting in regular light physical activity. I’m eating fairly well. I’m calibrating how much I can work, and I’m developing a more healthy (for lack of a better word) toward work.

It seems I can target around 15-20ish hours per week of work/business stuff without much risk of relapse. But part of avoiding that relapse is stopping work for the morning or the day, or even the week, when I can feel that I’m pushing myself to get through something. I take my naps when I need to. I stop and watch TV or read a book when that’s what I feel like. Per Jalan, I take a lunch break, and I spend an hour or two most weekday mornings in a coffee shop. There are certain kinds of work I’m permitted in the coffee shop, but otherwise it’s a gradual entry to the day and taking some time for self-care. This also helps keep me from going stir-crazy now that she’s working long hours. I’m prone to cabin fever.

15-20 hours doesn’t sound like a lot to me. It does help me realize that if I had any other career than the one I do, I’d be filing for Social Security disability. There’s no doubt or equivocation about that. There is no full-time occupation I could do. But I also, as I’ve talked about recently, have the good fortune to have the skills to bring in a decent income in those 15-20 hours (some weeks more like 10, some more like 25). It does mean I’m shedding any “donated” time. I can’t afford the opportunity cost to work on a project that may someday might we hope lead to funding. And that’s a good thing to realize. I’ve been behind on my commitments since the relapse at the beginning of August. I’m slowly catching up, but I’m being very careful about making new ones.

But on the upside, I took a work trip this week. I flew across the country to give a presentation at a conference. It’s the first time I’ve traveled for work since getting sick, and I used to go around the globe. It’s only my second air travel since CFS, and the other was for the Mayo Clinic. It wasn’t the best presentation I’ve given, but it wasn’t the worst, and I attended some other talks while I had the endurance. Now I’ve got a cold and I’ve napped around eight hours today, but totally worth it. For the rebound in self-concept, if nothing else.

All that said: One of the possibilities for my fatigue syndrome isn’t “classic” CFS, whatever that would be, but a disorder in mitochondrial metabolism. The test for this is usually a muscle biopsy, which is typically taken from the bicep. I haven’t done it yet because I was on anti-platelet meds through this July after the arterial stent last year. No responsible doctor would take the risk of doing that biopsy unless it addressed something acutely life-threatening. But I’ve scheduled an appointment with my internist for this week to talk about setting up the consult at the Muscular Dystrophy Association clinic at the local hospital to see how we’d go about it. So we might learn something new.

Part of the timing of this, even though the CFS is “managed,” is because I’ve also realized I need to think about scheduling heart surgery to correct a congenital defect. The defect was found in the Summer of Diagnostics last year. It’s not causing any problems yet, but will eventually if un-addressed. So I might as well get it done while I’m in as good shape as I am, and I’m forecasting to Jalan’s next significant vacation availability to help me recuperate.

And, of course, no biopsy again if I were to do the heart surgery first.

My mood about all of this is good. There’s probably not much that could be done about a mitochondrial disorder, but it could affect the management strategies to have a more precise diagnosis. That, and I’d (finally!) know which specialists to be working with.

There’s a lot ahead of me, but there’s also a lot behind me, and I’m in good spirits. Except for the damned cold, but that’s the least of things. It feels weird in some ways to be upbeat about heart surgery, but I’ll take “upbeat” over “depressed” any day of the week.

 
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Posted by on September 14, 2014 in Health

 

Empathy for mental illness: It cuts both ways

Since Robin Williams’s suicide, there has been a heightened national discussion of depression and other mental illness. Much of this discussion is from people who have experienced depression and can understand how it could drive a seemingly happy, successful, and loved person to suicide. Much of the more publicized discussion is from people who have not experienced depression (or think “a few bad days” or “sadness” is the same thing) and can not understand that.

I just read John Scalzi’s blog post responding to Henry Rollins’s victim-blaming LA Weekly piece (not linked here). Scalzi says in the post that he has not experience depression, but also that he knows that he does not know what it’s like.

On reading this, I realized that I have no understanding of what being mentally healthy is like. My mental illnesses are so much a part of my inner life, and have been literally as long as I can remember, that I don’t know what it would be like to view the world without that lens. These illnesses are better controlled now than they have ever been, but they are still present and I always know what it is like when they are, for lack of a term, asserting themselves.

The upshot is that I do not have the experience of a Henry Rollins or other victim-blamers. I do not understand what it is like to not understand these problems. Yes, the cultural wisdom is gradually moving toward a disease model of mental illness. But slowly, and not uniformly, either across social sectors, individuals, or specific disorders.

It makes me look in myself for some empathy for the mentally healthy as they respond (clumsily) to the mentally ill.

EDIT: My friend Tomio Black has followed this up with his own thoughts.

 
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Posted by on August 24, 2014 in General / Overhead, Health

 

Reconditioning, not so much

A bit of a setback.

The physical therapist Monday had no clue about CFS, and didn’t adapt his recommendations on the ankle for what I told him about it. His advice for reconditioning was not much more than “exercise as tolerated.”

In other words, I drew a sports medicine guy.

I did the assigned exercises Tuesday, and yesterday (Wednesday) I was a complete wreck with the fatigue symptoms. I tried to do a reduced set yesterday, but my calibration (and the PT’s) is still clearly off.

I’ll get there. I will. But it looks like reconditioning may be necessary <i>before</i> the PT work for the ankle.

grumblesigh

 
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Posted by on June 12, 2014 in Health

 

Reconditioning (starting slowly, and fishing for encouragement)

Ok, diving into this. My initial physical therapy appointment is Monday. I’m reviewing CFS-specific resources, both to inform the PT and to start to track.

My baseline is mediocre-to-fair (for me), between the sprained ankle, the stress of moving, and the ensuing opportunistic infections, including a nagging cough. I’m also wrestling with a new bout of insomnia. I’ve been doing no significant exercise for the last two months with the combination of the above, but still maintaining daily activities, including stairs in the home, chores as tolerated (though I’ve been reprimanded when I pushed beyond that), walking the dog briefly, and light outings.

On CFS/energy scales, my current level is just at the low-end of the “in recovery” zones.

One of the challenges is that hitting the anaerobic threshold, or even spending much time in the aerobic zone, of cardio exercise will frequently result in relapse. So the cardiac rehab I did last year was probably exactly the wrong thing. Some of the recommendations for starting are 3min up / 5min down, repeat. So regular gym-going is also inefficient/possibly harmful.

But the ankle is healing (still splinted), and the other things are coming under control. I’m off of daily caffeine (with intermittent use, because coffee), seldom drink, and never smoke. I do not yet have an HR or activity monitor, and budget is very lean, but I’m looking at options that let you set your own target HR (see previous paragraph).

I’m on moderate doses of B6, B12, and D3, all of which tend to be low and hard to raise in CFS, but haven’t had lab tests on those in some time. It doesn’t help that, at last check, my insurance wouldn’t pay for Vitamin D testing. Though if it’s indicated by CFS, that might help. My diet has been mediocre during the move, but is coming back to where I want it, with more poultry for meats and plenty of produce. My weight and waistline are trending the right direction again.
Advice and (especially) encouragement welcome!

 
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Posted by on June 7, 2014 in Health

 
 
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