co-working, “getting out of the house,” and the importance of a regular schedule

 

On Friday, I got to work at 10 am, unpacked my laptop at one of the many desks, and got to work writing while sipping my tea.  I took my noon nap on the desk, ate lunch, and left at 4 pm, having accomplished a lot. 

Sounds like an ordinary day at the office, right? 

Except it wasn’t: I’m a self-employed writer, and I’ve been working from home and in cafes for years.  I don’t have an office to work from, so where was I?

Enter betahaus, a co-working space here in Berlin that my husband read about in a magazine this past week. 

For 10 Euros for one time, 6 Euros per time if you come 12 times, and so on, you get the most important benefits of an office: regular hours (it’s only open 9-6, Mon- Fri), a desk, WLAN, drinks (and food), a printer (etc.), and other human beings also doing work.  It’s relatively quiet (no music like at cafes), but not so silent you feel lonely. 

Oh, and not to be overlooked: it’s not at home!

I was psyched (I’d never heard of this concept before), and having been there once, I still am. 

Because I think this just may be the solution to two different problems I have: a) I’m a writer and have trouble keeping a regular schedule and not getting distracted and procrastinating (some people like being their own boss.  I think it’s a bit tough.) and b.) I’m a Narcoleptic who sometimes needs that regular schedule and the pressure of having to go to work or being at work to keep me out of bed. 

This is why I previously worked at cafés, but the past few months I find I just can’t get much done there anymore; the noise is distracting and you feel a bit out of place working in a place where normally people just sit and eat. 

Plus, people bother you if you try to take a nap (unless you are in Starbucks, where you could dance on a table and employees wouldn’t notice :-)).

It’s far too easy to take a nap, oversleep, or take too long of a nap when your comfy bed is next door and no one is going to see you doing it. 

But it’s more than that: when you’re at the office you’re in work mode – and personally, I realize now that I really need that work mode, otherwise I will end up working almost every day of the week, my free time blurred with my working time.

If I’m going to be weird and take a nap with my head on the desk or lying on the leather couch (I didn’t have the nerve to try that one yet though, but there was one there…), I’m going to think twice about taking a nap when I’m feeling a bit tired, and if I do it, I will keep it short. 

Napping on a desk just isn’t that comfy (yes, even using a jacket/sweater).

How did I come across this idea?  Actually, it was my husband’s idea: he read the article (in German) and suggested I try it.  (Well, it was more like, “tomorrow you are going to go there and try it,” lol, but I couldn’t really argue because it was such an awesome sounding idea.  He knows I’ve been struggling with being self-employed and working from home.)

Which brings me to a few lessons I learned about myself that might be helpful for other Narcoleptics: 

1. If I want to do work, I need a work oriented space, and I need to get into “work mode” (i.e. I’m here to work, so get started (as opposed to I’m here to eat lunch and work)).  I used to think that “just getting out of the apartment” was helpful as far as getting things done and staying alert were concerned, but I don’t think this is very true anymore.  Although I’m not going to sleep while taking a walk, the benefits of “just going somewhere,” at least for me, are generally short lived.  (Sure, I might go to a café to work, but lately I find that after an hour or so I find it hard to get much done and I really just want to leave.)  For me, if I want to get work done I really need more than just being somewhere else: I need a space that is all about working, a space that puts me in work mode.  Co-working is good for this.  I suppose a library might also work.  Somewhere that is centered around working and not around eating/drinking coffee.
2. I need a regular schedule, and a regular routine, both for my productivity and for keeping alert (and for keeping the sleep and nap schedule I need for that).  The biggest insight for me, though, was that I need to try something new to make this happen.  As the saying goes, “If you keep doing what you’ve always done, then you’ll get what you’ve always gotten.”  I think this is an important lesson when it comes to simple lifestyle advice like this one: if you’ve already been trying to do something and haven’t been able to, maybe you need to do something different this time instead of thinking it’s all a matter of using more willpower to do the same thing (again).  Years ago, my neurologist told me it’s very important for Narcoleptics to keep a regular schedule (and not just a sleep schedule, but a life schedule).  This seemed like good advice, but the devil is in the implementation…  It’s harder to make these sorts of changes than one might imagine.
3. Perhaps this is also a lesson on giving advice: repeating the same old “you should get out of the house/ take a walk/get out of bed and then you’ll feel better/get more done” advice to a Narcoleptic (or anyone for that matter) probably isn’t that helpful if they’ve heard it a million times before.  However well meaning, it may even be seen as criticism, or not being supportive/not ‘understanding’. Suggesting a new strategy or something different – in combination with being supportive – might be much more effective, as with my husband’s suggesting I try something new that I hadn’t heard of.     

A few more words on co-working before I’m done.  If you too have trouble with some of the issues I’ve mentioned here, you might still be able to benefit from co-working even if you stay at home or don’t work. 

There is no rule that you have to do “work” here; you could really do anything you want.  You could do crafts, read a book, surf the internet, and many other things other than working on a laptop.  You could make phone calls, write thank you notes, make to do lists… the possibilities are endless.  And of course, there is no requirement that you come every day of the week, or even very often. 

Also, as far as cost is concerned, if you are using co-working for work purposes, you might be able to write it off on your taxes as a work cost (you can here in Germany).  There may also be places near you that don’t charge if you don’t come regularly, such as this one I found in San Francisco.  Finally, as I mentioned before, you might also be able to use this strategy in other places, such as libraries.

What do you think about co-working?  Do you find you have similar issues to the ones I’ve described, and if so, how do you deal with them?

September New York Times Article on Narcolepsy

In case anyone is interested, I just found a news article from September featuring six different Narcoleptic patient stories.  The six people are from all over the US and their stories are very different.

You can either listen to a short sound clip from each person or browse a slideshow that summarizes each story.  Each story is also accompanied by a few pictures, which adds a nice touch.

I thought it was very well done, and it was particularly interesting to me to see how each person has dealt with Narcolepsy.

Here is the link:

“The Voices of Narcolepsy,” The New York Times

You can also join in the discussion in the comments section of the site.

What do you think?  Do you identify with one person in particular?  Did you learn anything useful?

Narcolepsy, Migraines, and the Migraine Threshold

 

(image from www.howtocopewithpain.org/blog/316/migraine-statistic/)

As my birthday present, my husband recently took me to Munich for a few days. 

What did I do for one of the three days?  You guessed it: I lay in bed with a terrible migraine, silently praying for the pain to end and for housekeeping to leave us alone.  Fortunately, we still had a few days to see the city, but it was still not fun to miss a day.

If you have Narcolepsy and get migraines or headaches, welcome to the club.  It turns out, you’re not the only one. 

According to one study done in Germany, Narcoleptics get headaches and migraines far more frequently than non-Narcoleptics. 

Having interviewed 68 patients with Narcolepsy for headache symptoms, the study found that a whopping 81% of participants reported headaches that fit the diagnostic profile and 54% of the patients had the profile for migraine (64% women, 35% men).  That is much much higher than stats for the general population.

Even stranger, though, was the finding of another study that said that on average a Narcoleptic who gets migraines or headaches will start to get them about a decade after they first started showing Narcolepsy symptoms.  As one article points out, this suggests that there is some connection between migraines in Narcoleptics and having Narcolepsy.  This was news to me.

Skeptical (it does sound a bit strange), I did the math myself, and was shocked to discover that I fit the ‘migraines after a decade’ theory almost exactly: I started getting migraines about 10 years after first showing symptoms of Narcolepsy.

Years later, although I still can’t imagine why Narcoleptics would get headaches 10 years after getting Narcolepsy, I have come up with a theory on why they might get more headaches and migraines than the average American.

My hypothesis is simple: I think the “migraine threshold,” or the number of “triggers” that must build up before one gets a migraine, is simply lower in Narcoleptics because we don’t get enough refreshing sleep (or because of the EDS that is part of Narcolepsy).  In other words, it may take fewer migraine triggers (such as food, stress, or the weather) for a Narcoleptic to get a migraine, compared to someone in the same situation who doesn’t have Narcolepsy.

I recently read a book on migraines called Heal Your Headache, whose basic premise is this idea of the migraine threshold.  The book then goes on to detail the ways you can raise your threshold so you no longer get migraines (higher threshold = less likely to get migraines).  In the book, Buchholz, the author, explains at one point that your sleep habits (and especially how much sleep you get each night) can be a migraine trigger, lowering your threshold and potentially making you more likely to get a headache.  Apparently not getting enough sleep is a migraine trigger for some people.

When I read this book, I thought to myself: well, not getting enough sleep isn’t my problem.  I always get at least 8 hours at night! 

But today it occurred to me that this (the number of hours I sleep) is besides the point: sure, a Narcoleptic might get what should be ‘enough’ sleep at night, but the quality of that sleep is going to be relatively low, leaving them still tired after the recommended number of hours.  Regardless of their nighttime sleep, a Narcoleptic is going to be tired during the day.

Put simply, one way to look at things would be to say that Narcolepsy (like lack of sleep for the average person) itself is a trigger that lowers one’s migraine threshold, resulting in more Narcoleptics getting migraines and headaches.

I’m not a doctor or a researcher, but I think this makes sense.

The good news is that this book details ways you can lower your threshold, including the migraine elimination diet that has made the book famous.  I am still trying this diet, which is quite restrictive, but I can say that since I’ve been on it I’ve gone from having at least one migraine a week (sometimes for multiple days) to only getting them maybe twice a month.  I’m hoping that if I start following it more strictly, I’ll finally stop getting headaches all together :-).

What about you?  Do you also get migraines or headaches?  How long have you had them and how do you deal with them?

What is Narcolepsy?

Just to make sure we are all on the same page, I thought it would be a good idea to briefly explain what Narcolepsy is.

Narcolepsy is a sleep disorder characterized by excessive daytime sleepiness (or EDS) despite adequate nighttime sleep.  It affects approximately 1 in 2,000 Americans, although it is considered to be very much under diagnosed.  Narcolepsy is a neurological disorder that is believed to hereditary in origin, although it is not well understood what causes the onset of symptoms. 

Most people get the disorder in their teens or early 20s, although one can get Narcolepsy at any age.  Unfortunately, the average Narcoleptic is not diagnosed with the disorder for many years, during which time it inflicts significant damage on their life. 

According to the Stanford Center for Narcolepsy, one recent study said the “mean number of years between the onset of symptoms and correct diagnosis was 14 years.”  Some people wait many years to go to a doctor because they don’t consider sleepiness to be the sign of a medical problem, while many Narcoleptics struggle to get a correct diagnosis and may first be incorrectly diagnosed with other problems, such as depression.

Narcolepsy is characterized by four primary symptoms, in addition to abnormal REM sleep.    Although cataplexy (the second symptom listed below) is considered by many to be one of the hallmark symptoms of Narcolepsy, the only symptoms common to all Narcoleptics are EDS and abnormal REM sleep.  A Narcoleptic may or may not have the other three symptoms.  I personally only have three of the four.

The four primary symptoms of Narcolepsy:

1. Excessive Daytime Sleepiness (EDS) – persistent, sometimes overwhelming drowsiness and fatigue despite adequate nighttime sleep.  This may include falling asleep at inappropriate times (although unlike in the movies most Narcoleptics do not fall asleep mid-sentence).
2. Abnormal REM sleep – disturbed nocturnal sleep and an abnormal daytime sleep pattern.
3. Cataplexy – the sudden loss of voluntary muscle control, usually due to strong emotions, such as laughter or surprise.  This can range from weakness in the knees or neck (for example) to full body collapse, and can last anywhere between a few seconds and 30 minutes.  Cataplexy generally occurs more often when the person is stressed or fatigued. I personally only have mild cataplexy, but it generally happens to me late at night or if I am unusually tired.
4. Hypnagogic Hallucinations – vivid, often frightening, auditory or visual hallucinations that can occur when a person is dozing, falling asleep, or waking up.  To give you an example of what this is like, here is an example from personal experience: You have a dream that you are being eaten by a gigantic spider which is on the ceiling (and you can feel the pain like it’s real).  Realizing that this is a dream, you wake yourself up, only to freak out because although the dream and the pain of the spider eating you is gone, you can still see the giant spider hovering over you, albeit doubled.  Terrified, you get up, turn on the lights and the spider goes away, until you fall back asleep and there is the spider again in your dream...  However, sometimes they are more weird or annoying than scary (for example, I sometimes think someone is listening to a loud movie in the next room while I am asleep.  Only when I go in to tell them, “Turn that off it’s keeping me awake!”, I discover that no one is there).
5. Sleep Paralysis- a temporary inability to move.  This can occur while one is going to sleep or waking up, when the brain is half-awake and half-asleep.  I personally don’t suffer from this symptom.

One secondary symptom that may appear is called Automatic Behavior, which is when a person continues to perform a routine task despite being in the midst of a sleep attack.  Although they may appear to be awake, they are not conscious of what they are doing, and later on they may not remember what they did during this time. 

An example: a person with Narcolepsy might continue to take notes during a long lecture at school despite having fallen partly asleep.   When they drop their pencil, they wake up and look down at their notes, only to realize that what they have written is total nonsense.  Although they thought they were awake (albeit struggling not to nod off) and taking notes, their brain was actually half-sleep, hence the notes being nonsense.

Narcolepsy is generally treated with a combination of medication and lifestyle changes (such as naps, regular sleep schedule, etc.).  I will be covering the treatment of Narcolepsy in depth in this blog.

This post is only meant to be a brief overview of Narcolepsy, in case anyone is not familiar with the disorder or the basic terminology.  If you would like more information on what Narcolepsy is, I would highly recommend that you take a look at the following sites before reading the rest of this blog (as I will generally assume that the reader has a basic understanding of the disorder).

• Wikipedia (this article is very well done)
• Narcolepsy Network (a patient support organization for Narcoleptics with a lot of useful information)
• Stanford Center for Narcolepsy (a very reputable and well known Narcolepsy research center)

Introduction (or, why some brides nap on tables)

Having been married for a full hour, most brides don't proceed to nap on a table during the champagne reception. 

If you walked into a fancy restaurant for lunch and saw a bride, wedding gown and all, asleep with her head on an empty table, you would probably wonder what was wrong with her.  Is she upset?  Is she sick?  Did she stay up really late last night celebrating at a crazy bachelorette party? 

Me?, I would say, leave her alone; she may well just be taking her daily 25 minute nap around noon like she has for 17 years.  Maybe, just maybe, the bride has Narcolepsy.

How would I know what said bride would want? 

It’s simple: It’s me.  I’m the bride in the hypothetical scenario. 

Last August, my now husband and I got married in a small ceremony with our families in the morning, and afterwards we went to a gourmet restaurant for champagne, appetizers, lunch, and cake.  After spending some time with our guests on the terrace overlooking Berlin, I went inside to our table and slept while my husband entertained everyone.   

We had arranged to have the champagne and appetizers last long enough so I could both enjoy them and take a nap without missing much, and the restaurant staff was informed of the plan (i.e. leave the bride with her head on the table *alone*, lol).

Sure, it felt a bit weird, but I know myself well enough to know that it's a VERY VERY bad idea to skip my nap on any day, not to mention on my wedding day. As strange as it sounds, it worked perfectly and I had a great day. 

Sometimes you just have to get creative.

If you have Narcolepsy, I don't need to tell you that it isn't easy. If you have Narcolepsy, I don't need to explain to you why N is for not just for Narcolepsy but also for Naps (and for me, Noon, the time when I take my first nap).  Having Narcolepsy is a challenge, a daily challenge, even under the care of a good sleep doctor and while taking medication and naps. 

Getting information on how to cope with Narcolepsy that goes beyond the basics is also a challenge, a seemingly never ending drama starring you, your doctor(s), any Narcoleptics you talk to, and the Internet, with a lot riding on sheer luck (for example, does someone on Talk About Sleep know the answer to your question, and if yes, are they going to read your post and reply to it?).

Over time, you get better at it: you learn what medications do and don’t work for you.  You learn that some things you do make you feel better or worse.  And over time you learn a lot about Narcolepsy.  More than you ever wanted to know, and yet not enough. 

However, having be at this for 17 years, I can tell you that a) I’m still looking for better ways to cope, and b) I think that there has to be a better way for Narcoleptics to share information and their experiences than what I’ve just described above. 

My goal is to make this blog the resource I wish someone had handed me back when I was diagnosed (although I would have been happy with someone handing me this a few years ago). 

While I’ve found ways to connect with other Narcoleptics online, I still feel that there is this huge gaping hole when it comes to how people learn to cope with this disorder, and I hope that maybe others can learn from my experience what I learned largely on my own (albeit with help from many others along the way). 

I hope you will join me as I share my years of experience and continue to search for better ways to cope with Narcolepsy.  Please feel free to add comments and ask questions.