Easy Things Are Not Always Easy

Sleep study tonight. I have mixed feelings about it. On the one hand, I’ve been looking forward to it since it was scheduled. On the other, I’m also nervous about it.

My working theory is that the severe fatigue, brain fog, and memory problems I experience are due in large part to my sleep issues. I’ve spent the last two years trying to sort out my sleep, much of it being guesswork. I’ve twice had take-home sleep monitoring devices, but beyond ruling out obstructive sleep apnea, I didn’t get much beyond that. Tonight, I’m having a full sleep study in a proper sleep lab.

With that said, I know that it’s generally a bad idea to get my hopes up about diagnostic testing. Anything I can do to put more energy into the bucket, I will do. Fixing my sleep has the potential to make a massive difference. If I can get quality data. If the somnologist who will be interpreting my results reads the research I sent to my doctor. If my doctor is willing to see me as an equal partner.

The fatigue and the brain fog so severely impact my life that it’s hard to not be hopeful about something like this. While I do my best to make peace with the reality I currently have, I want my life back. There is a level of functioning I consider acceptable and I’m not even close to that. Figuring out why my sleep quality is so bad and finding adequate treatments has the potential to give me a lot.

I can’t attend school full-time; I’m on a part-time schedule and even that requires me to be extremely careful about my energy management. I still need other people to do my grocery shopping for me. I still can’t have more than two appointments, meetings, or social activities in a week without risking sending myself into a flare. Before I got diagnosed, when I did try to work and do school (both part-time), I failed my only academic class because I was so exhausted after a shift I couldn’t study. To say I’m worried about my future, about supporting myself once I’m out of school, about having a life that is anything other than miserable, is an understatement.

Technically, I know I could drag myself to an office job forty hours a week. (For a bit. Until the inevitable flare that would likely hospitalize me.) Every ounce of my energy would go into showing up, and functioning, and going home. Nothing left over. No cooking. No cleaning. No reading. No exercising. No creating. No thinking. Looking at all the things I would like to do, but simply can’t. The word “fun” becomes shorthand for, “Something I’d enjoy…if I had the energy to enjoy it.”

I’ve done it before. It’s a horrible existence. If you can’t viscerally appreciate how awful it is, think about it this way. Pushing beyond my energy limits is like having the flu 24/7. Maintain a normal schedule, plus social engagements and hobbies, when you have the flu and tell me how it feels. Tell me that you’re capable of enjoying any of it when all you want is to go back to bed, when your body screams at you every time you move, when standing is like sprinting, when a simple conversation leaves your head pounding for hours afterwards. Tell me you don’t feel like the world is passing you by while you struggle mightily to simply maintain your existence. Try having a happy, productive, fulfilling life when that is your reality. Want to end the pain yet?

Remember that my flu never goes away.

The only way I’ve found to not feel that way every waking moment is to drastically reduce my activity level. Anything that takes energy – getting up for water, answering a phone call, making small talk – has to be factored in, because it’s absolute hell if I don’t. I won’t have room for the things that truly matter to me, like being able to retain anything whatsoever from the classes I love, or spending time with friends and family where I’m truly present, if I don’t. I still don’t have enough energy for those things, but by being ruthless with demands on my energy, I have a bit. A couple of hours each day. But for my future, for the things I want to do with my life, I need more energy.

So yeah, I’m a little nervous about tonight. I have options; I have potential drugs to try; I have information. I won’t be desolate if things don’t go well, if I don’t get useful data, if the somnologist rules out sleep apnea and then fails to keep looking. I have some pretty good ideas about why my sleep is so bad; more than anything, this is to give me a better idea of which components of my underlying issues are contributing the most. But I’d be dishonest if I didn’t admit how much this has the potential to affect my life.

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Response to My Doctor

Bit of a rant directed at my Kaiser doctor. And by “bit,” I mean it’s a rather profanity-laced stream-of-consciousness.

I just read the following in my Kaiser medical record. [Ignore the use of “she” to refer to me, as I haven’t come out to Kaiser.]

HPI: patient with Ehlers-Danlos. In a support group for chronic illness. Spends a lot of her time hunting down information about her disease and looking for solutions. Discussed with her that she needs to be 2- headed about this. On one hand she needs information and resources. On the other hand she needs to disengage and live her life and have fun and pursue her goals. My sense is that she is obsessing about her illness as a way to gain control. She needs to face that she has a chronic illness that is not curable and mostly she needs to adapt and live a great life despite it.

Very concerned regarding dysautonomia- multiple symptoms.

Legs are hurting all the time. Thinks she has chronic exertional compartment syndrome. Terrible pain in legs after exercising vigorously.

Sometimes swells and one time she had some weakness of her ankle that lasted about 20 minutes.

Fatigue and brain fog is still an issue. Nerve flares are less. Trying to tunnel into the information and get some answers.

I have a few things I’d like to say in response.

1. To start, I hadn’t seen or emailed you in about four months before this appointment. That’s a third of a year. Given everything I have going on, that’s an extraordinarily long time. But please, tell me how I should “disengage” more.

2. I spend a lot of time hunting down information because you people won’t do it. I had to find my damn diagnosis, fight with my last primary to even consider it, and send him a freaking research summary to get him to even send me to a geneticist to confirm it. I should not have had to do that just to get a specialist referral. And I haven’t even started talking about finding treatments for it — again, all on me. As you might be aware, doing what is in fact your job takes a lot of time. Trust me, I’d much rather spend my time elsewhere.

3. No shit it’s incurable. But the symptoms can be managed, with proper medical intervention. Emphasis on proper, which I’m coming to believe Kaiser is incapable of doing.

4. How about someone decides that you get 4 hours or less of energy per day. During this time, you have to shower, make food, get yourself to and from places, do physical therapy… Oh, and don’t forget, you need to do things called “attend lecture” and “study.” (In your case, it might be called “work,” or possibly “minimize patient concerns.”)

During this time, you are mostly exhausted, not clear-headed, and in a lot of pain. If you exceed your energy limit one day, you have to make up for it by reducing your energy expenditure the next.

If you continually exceed your energy limit, after a period of time you will be so sick you are unable to leave the house. You will be unable to walk without running into things. You will be unable to do simple math without pen and paper. You will stop understanding speech in your native language. You will be so cold you have to sleep in front of the heater. You will be in such excruciating pain that if you drop something, you physically cannot stoop pick it up.

You will be unable to communicate much of this, because the few words you even remember at this point won’t line up in your head long enough to speak them. You will be lucky to send one email every two days, and will have to decide which professor, which TA, which campus administrator, or which doctor should be the recipient.

Come talk to me about “pursuing goals” after you’ve lived this way, with no answers other than what you yourself find, all the while being continually underserved by the medical establishment.

I have huge dreams, and I need a better baseline of health than what I currently have to pursue them. So either help me raise that baseline or get the hell out of my way. But don’t you dare tell me to “live my life” when it’s my health problems that are limiting me.

5. Obsessing? Are you serious? Do you have to be conscious of how you sit, how you stand, how you reach, how you move every waking moment, or risk actual injury and pain if you’re not? Does your heart rate suddenly go up to 110, 120, 130, 140 beats per minute while simply sitting and reading, making you feel shaky, sick, and lightheaded? Are you never, EVER without an intrusive level of pain?

No? Then you can take your beliefs about me obsessing and go fuck yourself. No, really. Go fuck yourself. That I do have other things I focus on is a testament to how hard I work to maintain some semblance of a life.

6. As for adapting, tell me how easy it is to “live [your] life” and “have fun” when simply getting ready to leave the house exhausts you. Tell me how happy you are. Tell me how easy it is to appreciate that you’re alive when it feels like your body is literally shutting down, day after day.

Remember your first year of residency? Remember how exhausted you were every single day? Triple that, throw in constant outright delirium to the point that driving becomes unsafe, and have every system in your body revolt. You might have an idea what it’s like living with what I have. Possibly.

The fact that I do have fun is because I have fucking adapted. I’ve adapted by switching to an extremely part-time schedule at campus. I’ve adapted by ceasing pretty much all extracurriculars, because my singular academic class takes almost everything I have. I’ve adapted by saying “no” to things much more than I say “yes.” I’ve adapted by maintaining a very rigid sleep schedule. I’ve adapted by using a wheelchair so I don’t burn up all of my energy simply getting to where I need to go. I’ve adapted by understanding that no amount of sleep, no amount of healthy food, will be enough to recover if I try to push beyond my very firm 4-hour limit.

You know why I meditate? Truly? It’s because I have to deal with you and people like you. I am stuck in a system that isn’t just prone to inertia, but LIVES by it. I deal with doctors who, as a rule, utterly fail to understand the magnitude of impact of my health issues on my quality of life.

At best, it is sheer ignorance to tell someone like me to “adapt” and “live a great life despite” my chronic illness. Move on is what you’re saying. Get over it is what you’re saying. You don’t get it. If I seem wrapped up in my disease, it’s because my disease wrapped itself around me.

So the next time you want to comment on how a chronically ill, disabled person manages their life – a life you don’t see, a life about which you clearly have absolutely NO idea – you better be speaking from direct, personal, comparable experience. Otherwise, shut the fuck up. And that is not a request.

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Chronic Exertional Compartment Syndrome: Introduction

On Friday, 24 October 2014, I had a bilateral 4-compartment fasciotomy for chronic exertional compartment syndrome (CECS).

I’m writing this because when I went hunting for information both about CECS and about fasciotomy for non-acute compartment syndrome, there wasn’t a lot out there, especially on the personal side.

CECS isn’t super common, but it is most definitely under diagnosed. The literature states the mean time to diagnosis is 22 months. For a condition that can be absolutely excruciating at times, that’s way too long. (Remember, that’s an average.) In my case, I went over 7 years without it being properly recognized, and the only other person I know who had CECS also went 7 years before it was caught.

The frustrating part is that not only did I have all the signs of it, I also was a textbook individual to get it: I was a 19-year-old military recruit. I decided to add my voice to the vast info-dump that is the internet with the hope that reading all of this may help someone else on their own journey with CECS.

I developed CECS around 7.5 years ago while in the Army, likely in relation to the 5 stress fractures I incurred at the same time. While the stress fractures themselves healed, I was left with an extremely high level of pain from my knees to my feet, and no explanation for it.

Fast-forward to August 2014 when I finally saw someone competent in sports medicine at Kaiser. (I’m taking a shot at you, US Army.) Granted, I was going specifically to be evaluated for CECS, so it wasn’t like the diagnostic component of their job was terribly hard at this point, but even so, they listened, said CECS was reasonable, and scheduled pressure testing for a couple weeks later. I got the pressure testing done (which, honestly, really wasn’t that bad; I’ll write about it in a separate post) and it confirmed I had compartment syndrome in all four compartments in both lower legs.

When you look up CECS online, fasciotomy is listed as a last resort for treating CECS. First line of treatment is typically rest, followed by reducing the intensity of the aggravating activity once you return to it, and physical therapy if needed. However, my sports medicine doctor didn’t even bother suggesting PT; he simply scheduled me a consult with the orthopedic surgeon who handles this part of the body. This was due to a few factors.

To start, I had CECS for well over 7 years at that point. The longer it goes without being caught, the more likely it is that conservative measures (meaning rest, reduced training intensity, and PT) will fail. Second, it came on with even a few minutes of standing, so at that point it was no longer “exertional”, it was just chronic. While it would go away (mostly) when I slept, it was pretty bad. Finally, I’d been doing PT in relation to multiple health issues pretty aggressively over the past year and it hadn’t made a bit of difference in the CECS pain in my lower legs. Thus, it was only a couple days later that I was chatting with the orthopedic surgeon who went on to do my fasciotomy.

(to be continued…)

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