Friday, April 30, 2010


7:33 am.

I got into bed nine hours ago, haven't slept at all.

It's times like this I thank god I'm unemployed. There's been many, many times I've gone to a job or a full day of classes on zero sleep. Sleep deprivation is a terrible experience. There's a buzzing in the head, inaudible, but still a buzzing. The ability to concentrate completely dissolves, and you feel alone and lost in your own head all day. The strangest and probably worst thing is the sensation of feeling dirty and tingly all day, even after showering. I can brush my teeth three times before I leave the house and my mouth still tastes acidic. And my teeth throb like they all have cavities.

It's a great relief to know I don't have an assignment due or a clock to punch. I do however have an acupuncture appointment. There's no way I can go. It's a new doctor so I don't know their cancellation policy, but I have a feeling it's 24 hours. I had one doctor, my regular internist, who was very nice. He never charged me for missed appointments. "It'd be like if I were treating you for headaches, and you said, I can't come in because I had a headache!" I loved him for that.

The first symptom of my CFS that was noticeable to my friends and family was the excessive sleeping. I'd amuse my family by sleeping until three pm. Then I'd shock them by sleeping until six. Then I'd really confuse them by sleeping until midnight.

Among my family I just had a reputation for being lazy, then depressed. Among my friends I was just known for really liking sleep. I didn't understand it, I couldn't hide it, so I did what I thought anyone would have done and I bragged about it. "14 hours you say? That's nothing. I slept 21!"

Still, I was surprised that my mom was surprised this year to hear me tell a doctor I had insomnia. "How could you have insomnia? You sleep all the time." It did seem ridiculous. But I explained to her that I didn't just have trouble waking up, I had trouble falling asleep too.

I remember once, during a long period of insomnia, leaving up an away message on AIM, "wish I could sleep" and my roommate, annoyed by my chronic oversleeping, responded harshly, "ha! I think you sleep enough"

The insomnia, the excessive sleeping, the day night reversal, this might be the most miserable part of CFS for me because it's so alienating. When you are nocturnal, no one, Dennys and iHop excluded, tries to accommodate your sleep schedule. I've never even had a sleep study. Two labs said they couldn't do one on me, that I should come back when I could sleep at night. "But if I could do that I wouldn't need a sleep study!" but they didn't seem too concerned. "We can't change our schedule just for you."

Even now with the CFS diagnosis, the stroke volume in heart failure range, the XMRV positive, the dysautonomia, my parents still give me the tough love treatment in the morning: "Come on. Sometimes you can get up if you want to! You got up yesterday." "Come on, Grandma's waiting, don't disappoint Grandma!" It doesn't matter if my doctor told them that sometimes it is physically impossible for people with CFS to wake up. They still treat me like a sleep-a-holic. I had insomnia after my appointment with Dr. Cheney last week. I had less than two hours sleep before they called me to leave for the eight hour drive home. Normally I need between nine and twelve or I can't wake up, seven absolute minimum. After hours of intermittent begging and pleading on both ends, they left without me and in a text message, told me to book a flight when I woke up. I couldn't imagine booking a flight, changing planes, the shock of it shook me awake, so I was able to call them and ask them to come back for me.

I have a lot of bad stories involving my parents or sister or roommate trying to wake me up. I don't like to think about them though. But every time someone persists trying to wake me up, in my half dreaming state I think about all those times.

Dr. Cheney says day-night reversal is common for CFS. It's also a sign of impending adrenal collapse. I have at least one online patient friend who's stuck with it. The last year and a half though it hasn't bee so bad. I got some sleep hygiene info from a sleeping clinic and it actually helped. I stopped reading and using my computer in bed. The bed is only for sleep now. I try and go to bed at the same time every night, that's the hardest part. I don't keep a clock in my bedroom so I can't worry about the passing time. I just set my phone alarm. If I think a lot of time has passed and I'm not asleep I get up and read for 20 minutes then get back in bed again. Sometimes I'd do this on and off five or six times before falling asleep. Tonight I wasn't so good though, there was a lot of lying awake.

Today is going to be a terrible day. I won't be able to read or do anything useful. TV will hurt my eyes and ears. The sun is harsh and intrusive. I could try and sleep when I can...maybe in a few hours, but then I'll be up all night tonight again.

I definitely won't be doing anymore writing today. The only reason I pulled this off...I don't know. My mind's been racing with thoughts all night, most of them just fragments. I guess I just wanted to write about this so much I was able to finish the fragments and make them a blog. Tomorrow though I might come back and find it's inscrutable, like scribbled notes on a nightstand.

There's a coffee shop in Hollywood called Insomnia Cafe, presumably because it's open until 4am. I loved it, back when I thought it was OK to go out and drink coffee at 4am. But I also wondered if it wasn't insensitive to real insomniacs. Insomnia is a terrible disease and co-opting it to sell coffee all night struck me as cruel and irreverent. These things happen though. Some diseases just capture people's imaginations. I wonder if there is a bakery somewhere called Diabetes, a tobacco shop called Emphysema, a bar called Cirrhosis. I saw on Peggy Munson's blog a billboard in Australia that used Chronic Fatigue Syndrome to advertise an island vacation.

After I read Dorothy Wall's CFS memoir, I went to her website and saw she'd written a review for an insomnia memoir: Insomniac by Gale Green. I haven't read it yet but I've been meaning too, it looks good.

One of my favorite books, is The Midnight Disease by Alice Flaherty. It's where I first learned the term hypergraphia: the overwhelming urge to write. I probably found out about the book during a fit of hypergraphia by googling "I can't stop writing" at 2am. I ended up reading this article by Dr. Flaherty. As I suffered from insomnia and hypersomnolence, so too had I suffered for years from spurts of hypergraphia and bouts of writer's block. I found this passage particularly compelling:

The thing I have been working on for the last 15 years is the basal ganglia. When I first started working on them, most people thought they were purely motor -- they controlled when your arm moved, and motor motivation in terms of getting your feet started when you walk up the stairs. It's now very clear that it extends to cognitive issues as well, and to emotional ones, and they're all very tangled up in this part of the brain. I was seeing this in my patients with Parkinson's. For example, two weeks ago a patient came in who was a [newspaper] columnist and her first symptom had been writer's block -- then depression, and then Parkinson's. It wasn't a coincidence. It was the same disease affecting different parts of the basal ganglia. We were talking about her writer's block and she began to cry, because no one had taken it seriously before.

I cried, because I had never thought to take my writer's block seriously. All along it had been so obvious that what I meant by writer's block--the sudden and confounding inability to get words out of my head and onto paper, was not what everyone else thought it meant--a creative block, lack of ideas, simply being unable to think of what to write. I then became convinced I was in the beginning stages of Parkinson's. It didn't matter that my doctor told me I was too young. "If you had Parkinson's I'd call the medical journals!" Even when I learned about CFS, I still thought it was just a stop along the way. More research and my visit with Dr. Cheney finally convinced me otherwise. I had a slightly elevated ANA, and I asked about autoimmune diseases, and he said:

“You know we’ve been looking at autoimmune issues for close to 25 years because a lot of times when people march into doctors with this kind of symptomtology they’ll get worked up for mixed connective tissue dissease and they’ll start looking at ANAs antiDNAs and sed rates. Pretty soon they scratch their heads and say, 'Well you kinda fit…." but you can never see something in my opinion that meets the criteria for a mainline autoimmune disease." “We’ve been waiting for lupus to erupt out of this diseae for 25 years, we’ve never seen that.” “Never happens” "We’ve been waiting for rheumatory arthritis, never happens.”

Once in a hypergraphic insomniac fit of desperation I found Dr. Flaherty's e-mail address, told her my story, and asked for her opinion. She replied with a very nice but ultimately disappointing letter--she urged me to try mood stabilizers.

I actually once saw someone reading The Midnight Disease at Insomnia Cafe. I usually don't talk to strangers but I was sure I'd found a kindred spirit. It turned out though that she was a psych major writing a paper and the book just happened to catch her eye at the library. I went on and on about how much I loved it, how much it meant to me. She said she just liked it because it was so easy compared to all her assigned reading.

At least this took up almost two hours. Just twelve more to go!

*Edit, called my doctor's office and they were very nice about rescheduling. When I said I thought the herbs he gave me might have caused the insomnia they said he would call me today to talk about it.

I've decided to take my morning medicine and just make a go for it. Not sure what I'll do though. Maybe just keep typing my thoughts. It's comforting. I wish I had a rug hooking kit. Maybe a jigsaw puzzle...suggestions welcome!


  1. Alison, I love the way you write. You really manage to convey what it feels like to have this illness. The frustration and misunderstanding of other people, the isolation. I used to have alot of sleep problems. When I eventually left college and moved home I used to sleep all day, just get up for a few hours for dinner and then back to sleep. Then I went through the insomnia and the day/night reversal. Those were awful lonely nights, when I knew I really needed to sleep but couldn't. One of my ways of coping was to read childhood books. I found them comforting and soothing and easy to read - I couldn't read adult books anyway, I needed simple language!

    I've mostly overcome the sleep problems now. I still find it difficult to get to sleep, but its just an hour or two now instead of all night. My doctor pretty much forced me to get into a routine of getting up at the same time every morning, whether or not I'd slept during the night. I wasn't allowed to sleep during the day and I found good sleep hygiene to help too. It actually took over a year to get to where I am now and it was really difficult. I tried some drugs too but ended up having bad side effects. My sleep isn't perfect and i still have some difficult nights but mostly I sleep between 8 & 11hrs and get up around 9 am. it really does make things so so much easier to have had a full night sleep. And my heart goes out to you. I hope you get some sleep soon!

    PS I found relaxation cds for sleep to help alot. And if i'm having trouble with my mind racing I do a guided visualization or if I'm tense I do a body relaxation cd. Let me know if you want me to send you some of the ones I use.

  2. Thanks Miriam! I <3 instant gratification. It sounds like we've been through the same thing. I'm glad you're not dealing with it now though! I thought I was done with it too, but not quite.

    A children's book sounds great about now, I have a couple. Nice idea!

    One sleep hygiene thing I gave up on was getting up at the same time every day. I thought it was more important that my body got the sleep it felt it needed, but anything is better than this. Maybe I'll try doing that again.

    I'd love any relaxing/sleep cd recommendations. I like them but the problem is I find they only work once or twice!

  3. Hi there, I just commented on anther blog about my use of audiobooks. I have suffered all my life with insomnia and 20yrs with CFIDS/FMS so I really know where you are. I learned to use audiobooks that I rent at the library as a way to start my settling down process at night. I stick to a certain time to go to bed whether I am sleepy or not and start a book. They allow me to hear a story instead of the restless mind ramblings. It has helped me for many years. I still suffer from insomnia and take Trazodone to help, but this way I have the book to listen to when I wake and can not get back to sleep. At this point I am totally addicted to my cd player anytime I am in bed. It keeps me from getting up and wondering around or getting too active. It is a way to make myself stay in bed and on schedule. I hope this made some sense and will be a little help to you.


  4. I've always been afraid to be addicted to something like pills or tv ("I need tv to get to sleep") but I think I'd take dependency over anymore insomnia. I resisted audiobooks for awhile. (It's not reading!) But I gave in last month during a bad crash and got an audible account, so I should use it. Just have to find the bedtime stories genre.

  5. You know, I just listen to what I normally like, which is thrillers or mysteries. May not be your cup of tea, but the point is to find something that you will enjoy even if you are not able to fall asleep to it.

    I fought going on sleep meds for many years, but once my doctors explained that most of us have a stage 4 sleep disorder and may need a med to help us, I finally gave in. And I will tell you, that with some sleep came a better quality of life. My symtoms are always magnified when I am unable to sleep.

    I hope you are able to get some rest one way or another and find a routine that will help you. I know how awful it is and I feel so sorry that you are going through this.


  6. Ugh, as a fellow CFS'er/insomniac, I feel your pain.

    I get similar reactions from family and friends and find myself continually unemployed. The world was certainly not built for us. I hope you find some relief soon!!!!!!!

  7. Hi! Sorry its taken me so long to come back! If you want to e-mail me at I can try send you on some mp3s of my favourite relaxation cds. I know what you mean about them only working once or twice. I find it depends alot on whether I like the sound of the voice or not. If I do i can listen to them over & over, if not they're useless! There are a few fairly good free podcasts on itunes. i couldn't figure out how to link to them but if you search for guided relaxation a few will come up. I like that they're free cos I can listen to them just once or twice without feeling i've wasted my money!

    And yeah getting up at the same time every day is really really difficult & feels awful for months & months. I wouldn't have managed to keep going only I knew my doctor was checking my chart every month & I'm a little scared of him! But it seems to have worked in the end. :)

    Hope you've been sleeping a little better the last few days!

  8. Another well-written, thoughtful post, Alison. I can relate to the insomnia..... it can truly be maddening at times. Especially since it renders me completely non-functional the next day. I listen to audio books as well -- since I can't read any more, it's my lifeline! Just make sure to get ones with a good narrator... books can really come alive with the right narration.

    Hope you get some relief (and sleep) soon!