I don’t know if I’ve mentioned this much in the past, but I have sleep disorders. Two, to be exact. One is a variation of insomnia called ‘delayed onset’, which means I have trouble getting to sleep to begin with. The other is called ‘alpha wave intrusion into delta sleep’ or ‘alpha-delta sleep’, which means that my brainwaves switch from delta waves (deep sleep) to alpha waves (normally awake) periodically through the night.
Typically, my sleep disorders are mostly a nuisance. I really can’t do things before noon anymore, my body just isn’t capable of it. Even with sleeping pills, I typically can’t knock myself out until between midnight and 1AM, and I need a lot of sleep. Before the inflammatory stuff started, I needed 9-10 hours pretty consistently; once it started, I typically needed about 12 hours sleep.
Lately, and I don’t know why, my sleep disorders have gone downright haywire. I’ve been having more trouble getting to sleep – 4AM, 5AM, 6AM, sometimes even 7AM roll by and still I’m wide awake. My sleep doctor tells me it’s important to wake up at the same time every day, so I try. Really, I do. I try my normal noon wake up time, and I’m so tired it hurts, so tired that I feel like there’s a lead blanket on top of me weighing me down. I go back to sleep, and wake up a few hours later because of the pain. Once again, I try to get up. Sometimes I make it to the bathroom and back. Yes, back – back to bed. Still so tired that I feel like I’m wading through molasses. Everything is slowed down or sped up, nothing feels like it’s moving on normal time, and it’s so hard to understand sounds around me. I’m sure my fiance’s sounds are words, but what words I do not know. Even when I know what words I’m hearing, it’s hard to make sense of them, hard to figure out what the sentence means. So I go back to sleep again.
I know I’m not supposed to, but here’s the thing: if I try to stay up, if I get out of bed so that I’ll have less temptation to fall back asleep, I just fall asleep wherever I am. I’m more prone to having night terrors when I’m sitting up, and I’m also much more prone to jerking awake. When I have night terrors (which are not at all the same thing as nightmares), I flail in my sleep. I hit and kick hard enough that I’ve fractured a finger hitting the wall and given many a black eye to people sharing my bed (I may have broken a friend’s nose when we were kids, but we’re not really sure – her nose had been broken once by a baseball a few years before that). I’ve had them ever since I was 10 or so. I suppose that means I have three sleep disorders, really, but that one hasn’t been officially diagnosed. It kind of surprises me that I don’t remember my parents asking anyone about it when I was younger, as they were quite violent and frequent.
I digress. Anyhow, if I try to stay awake, it doesn’t work until I’ve had enough sleep. And right now, my body is requiring somewhere between 12 and 15 hours. I don’t feel refreshed, I feel exhausted. Worst of all, I’m out of my sleep medications. I saw my sleep doctor on Tuesday, and he said he’d write for Rozerem for me. Rozerem is not the best of the sleep meds I’ve tried, but the sleep doctor is now concerned that I may have developed sleep apnea in addition to everything else, and the other drug I have tried can make apnea worse – quite dangerous. Anyhow, he didn’t remember to send the prescription, so my fiance called Wednesday, and again on Thursday, and finally the doctor sent in the prescription. Unfortunately, my insurance company requires a prior authorization, so I won’t be able to get my medication until Monday at the earliest (it theoretically could have gone through on Friday, but it appears my sleep doctor is not exactly on top of things, and the part of the insurance company that does prior authorizations isn’t in on the weekends). Meanwhile, I’m a wreck, and exhausted all the time. My pain levels are worse, and I know that the two negative cycles are feeding off each other.
I have the exam for my summer course on July 15th, so I am hoping that things are straightened out ASAP so I won’t be trying to take an exam in this state. I’d be worried about me falling asleep; as a matter of fact, I think I will make sure I have alarms set on my phone every hour or so to make sure that I don’t doze too long if I do fall asleep. Because of my disabilities, I have accommodations for exams (time and a half, special chair, etc) so I take my exam in a little room all by myself instead of in a lecture hall like everyone else. It’s a weird set-up, but it really does help with exam taking.
All this is to say, I feel terrible, and I haven’t been able to catch up with or do anything. I had hoped to work on writing this summer; I have novels that float at the back of my head, and I haven’t gotten to write them yet. I’ve only written two pages this summer. A pair of mages battling an evil defeated but not destroyed long ago await me in one piece that has twenty-some pages written; the avatar of the god of the sea is ready to set sail in another; contact with an alien race and a re-interpretation of a mainstream human religion (particularly as it pertains to love, gender, and sexuality) as understood by aliens lurks in another quiet place in my mind. There’s also a young adult novel that waits there, one about honor and duty, sword and king and country, and discovering oneself and love. I like all of the stories; I think they’re good enough to get the full length treatment. I just…I don’t have enough me to go around lately. I go to class, I read, and I watch TV, because just now, doing the reading and going to class is taking almost all of my ‘me’, and there isn’t enough left over to write. It’s frustrating, to have all these pieces just gathering dust. Hopefully, the 6 remaining weeks of the summer, after my exams are done, will be enough to get some serious writing done. And then, well, back to the grind for one fucking final goddamn semester (you can tell I’m frustrated, eh?) and I’ll be done with this damn degree. Then it’s just studying for the MPRE (multi-state professional responsibility exam) and the Bar exam, and…well, I guess that will be that. It looks like I have the option of taking the MPRE in August, which might be smarter, as I’m taking Professional Responsibility now and that’s all the MRPE tests on.
There’s another thing I want to talk about, regarding family, but I think that will have to be another night, as writing about THAT will wind me up and upset me, and it’s late enough that doing that might keep me up longer tonight. I can only hope I get to sleep before dawn comes.
Brilliant Mind Broken Body 
Hi Kali.
Everything is so much harder with you’re sleep deprived. I really hear you on that, having been there so many times myself. And also the frustration of not being able to write — I’m dealing with that constantly lately, too.
I wonder, reading about your new sleep problems, if you have ever been treated for any of the co-infections with Lyme disease, such as Bartonella. Bartonella can cause sleep disturbance, it’s rather infamous for it. Lyme and other tickborne diseases can also cause sleep disturbance. If you’re not still treating for Lyme and you haven’t been treated for any other tickborne disease, it’s something to consider. My sleep has improved a lot since doing my tickborne disease treatment, especially for Lyme and Bartonella. I guess I just wanted to give you some hope that it might be something that’s treatable at its root cause and not just something to try to find symptomatic relief for.
Hi, Kali–
I’m so sorry you’re having such trouble sleeping. It’s a real conundrum when lost sleep means needing to sleep long into each day in order to catch up or function at all. I really DO understand.
Here’s the thing, though: by sleeping so late into the day, it’s quite possible you’re setting yourself up for lost sleep during the nighttime hours–it’s a vicious cycle that really must be broken if you hope to get any relief at all. (I know–I’ve been through this one myself.)
The other problem, of course, is the physical pain and disorientation–the brain-fog–that comes from being horizontal for so long. It makes you want to lay down, once you’re up, but if you do, you just hurt that much more. And your brain never gets a chance to clear.
I’m afraid your sleep doc is right. It’s not going to be easy, and you’ll be even more exhausted before the cycle is finally broken and you’re in bed and actually sleeping during “normal” hours (between sundown and dawn). But believe me, it’s worth the misery and effort.
In the meantime, I’m wishing only the best for you. How are you liking your new digs? How are the dogs? The fiance? And do be proud of yourself for being so close to finishing law school. That’s no easy feat for anyone, let alone for a woman who’s had to do it in spite of almost overwhelming obstacles. After the upcoming exams, just one more semester to finish? WOW! Good job! Your future is full of bright possibilities.
For typical cases, yes, the sleep doc is absolutely right. I am, however, not a typical case.
Here’s the catch: in this state, I fall asleep sitting, even standing. I fall asleep mid-conversation. I fall asleep watching TV, reading, playing games…it doesn’t seem to matter. I have to be physically kept awake, and when things are this bad, that requires having someone do things that are painful to me, at which point I am awake but incoherently crying and begging to be left alone. We’ve tried it. It doesn’t work well, and it’s extremely stressful for both myself and my fiance (who has to keep hurting me and dealing with me begging him to stop hurting me – he ends up having to walk away because he can’t take it).
When my sleep schedule is badly disturbed, I need two things. The first is I need the sleep medication – I really can’t fix things without it, because part of the problem is that I’m waking up frequently during the night. The second is to slowly adjust my sleep schedule. If I try to violently fix it – that is, just start getting up when I’m supposed to again – all I do is exacerbate the problem, because I add in time (unintentionally) sleeping sitting up, which increases my pain levels and not infrequently leads to dislocations as I startle awake. I can adjust it by no more than 15 minutes at a time, and no more than 3 times a week. It will take me quite a while to recover from this episode. My sleep doctor and I have talked about it in the past, and usually he remembers that my sleep has to be more gently corrected.
The new apartment is still lovely. Having central air has been fantastic. At the old place, summertime meant worrying that I’d end up fainting while showering or going to the bathroom, because there was no way to cool off the bathroom. Here, no problem. It’s inconvenient that it’s farther from school than the old place (by about 15 minutes), but the neighborhood is ever so much nicer. There is green around us, and our drive home goes through a lovely park, along a stream. There are fireflies in the lawn around the apartment complex. (now, it’s not perfect, and there have been some DEFINITE issues – the worst of which being that there was a sewage leak into the basement below our apartment, and UGH the stench! They’re working on it, but apparently it involves a pipe that cracked outside of the building, so they’ve had to dig up a chunk of the lawn to get at it and such.)
The dogs are pretty much the same. Hudson has gotten used to Bailey, and they play a bit more often now than they used to. Bailey is still hopelessly in love with Hudson, and cuddles up to him, which he tolerates but doesn’t seem to encourage. A couple months ago, we tried switching Bailey to a cheaper food, which didn’t work, so then we tried switching her to Hudson’s food so at least we’d only have to buy one dog food, but that didn’t work either. This past week and a bit, we’ve been trying to switch Hudson over to Bailey’s food, and it’s made his itching much worse, so he’s going back to his food. It’s a nuisance, and they both eat the expensive stuff (she gets Blue Buffalo Basics, he gets Wellness Basics). Ah well, what can you do? Hudson needs his summer shave, but things have been intense enough that it just hasn’t happened. Fortunately, he really isn’t suffering, because I can’t be out in the heat, which means he doesn’t go out in the heat except for quick trips to do his business.
The fiance is mostly good, though we’re a bit stressed right now. It’s not yet 100% certain, but it’s highly likely he doesn’t have a job for next academic year. He’ll be doing research, in the hopes that he can better his resume with another publication and it’ll be enough to get him a more permanent job the following year. This is really his last chance at this.
At this point, with law school, I’m afraid most of my emotions are just…weariness. That kind of exhausted, stumbling trudge you have at the end of a trail that was longer and more challenging than you had any reason to expect it would be when you set out on it. Once I finish my last semester, it’ll be on to studying for the Bar exam. Ugh, and double ugh – Bar exams are evil, and I know I’ll be taking multiple exams, I just don’t know yet where I’ll be taking them. My current state for sure, and almost definitely my home state, and then we’ll see if the fiance gets an academic job, because I’ll have to take the Bar in that state, too. I’ll have to think about the likelihood of me practicing in other states – for example, I now live 15 minutes from one state border and an hour or a bit less from a second, so it’s not terribly unlikely I’d have clients across the state line, but I can only do that if I’m licensed in those states.
Hi Kali
I have hypermobile EDS and POTS and was suffering awfully with I insomnia last year. I was working full time on about two hours sleep a night and that was with sleep medication. My brain just pushed through it. So I know how bad it feels. The thing that has helped me with my sleep has been acupuncture. It wasn’t immediate but steadily it has built up and though I’m still taking my medications I am now sleeping 6-8 hours a night. If there is any way you can try it I’d really recommend it. Sleep is that bitch that determines everything else, including how we deal with the pain.
Take care of you x
I’m not sure if acupuncture is in the cards for me, at least not in the near future. I have tried it in the past, but I had an ER trip that reawakened my phobia of needles a while back. I think that if/when that calms down again, acupuncture is something I would try, but it is just not something I can do now. One needle takes a lot of psyching myself up, multiple needles is something I couldn’t do without a sedative.
I can understand that. I was awful when I first started going. Very jumpy and getting that heated up feeling. Luckily she understood POTS and was really good. Stopped while I recovered and only put a few in the first few months I went and I’ve gradually built up. Some places I still don’t like! It’s good though if you find an acupuncturist who understands. I hope things settle a little for you.
I had a very, very bad experience with needles when I was 17 (I was badly dehydrated, very sick from an intestinal twist, and borderline delirious; they had a lot of trouble finding a vein and tore me up pretty good looking for one). Since then, I’ve battled with this phobia. It fades, and then I’ll have a bad experience (I’m a tough stick), and it’ll be refreshed and the phobia comes back full-force. It is a true phobia, no exaggeration. I used to kind of flippantly refer to it as a borderline phobia, until the last time I lost it, when I was informed that yes, I had a true phobia, and it really ought to be in my chart. So very helpful – it’s in my chart but they never look to see it before they start on me.
I did try acupuncture several years ago, and I was never sure if it was actually helping. I did feel good after, but I was also spending the whole time in a very comfortable chair doing deep conscious relaxation of both mind and muscles. I was never sure whether it was the meditation/conscious relaxation or the acupuncture that helped, but it was something like $15/session, so I was willing to pay for it! If the phobia comes back down again, I’ll probably give it another shot. It bruises me pretty badly because of the Ehlers-Danlos Syndrome, but I’m used to having small, deep bruises – I usually don’t even know where they come from or what I did to cause them.
I have Elhers Danlos plus Porphyria and i have exactly the problems you describe here