O Sleep, Where Art Thou?

I've never been one for going to sleep.

The only time I ever desired sleep was when it was time to wake up. In college, I became determined to sleep as little as possible. I felt it to be an enormous waste of time. It pained me to think of all of the adventures I could be having and all of the information I could be learning during the hours which were reserved for slumber.

My freshman year, I did pretty well with no sleep. Having 4 or more hours of sleep a day was a rare occurrence. I pulled a lot of all nighters, for no particular reason. I attend a small, private university, and often times I'd be up during the night by myself, as everyone else slept. 2-3 hours was probably my daily average for sleep. And that seemed to be all I needed, too. I was never tired or low on energy - boy, do those days seem like lifetime ago.

By sophomore year I began sleeping about 4-5 hours a night, and that went on through most of my junior year, as well. Toward the end of my junior year though, I began to feel more tired and fatigued. I would try to sleep and instead end up lying in bed, eyes closed, for anywhere from 1-6 hours before finally falling asleep, and by then, it'd usually be time to wake up for class (worst feeling ever).

I began to notice other changes, as well. The pain in my hips and wrists seemed to be greatly interfering with my getting comfortable enough to sleep. And as someone who had always had the capacity to sleep no matter what the lighting or noise, I suddenly became completely intolerant to such external stimuli. There were many different times in my life where I actually couldn't achieve sleep without the TV on. But suddenly, the TV absolutely had to be off, or else I would never get to sleep. I also begrudgingly started wearing an eye mask to bed, since even the tiniest bit of moonlight would keep me awake.

When I finally would fall asleep, I'd usually wake up in the middle of the night drenched in sweat and completely uncomfortable. Sleep had always come easy to me in a lot of ways. For instance, I never understood why some people couldn't get back to sleep after waking up. It had never been an issue for me. But all of the sudden, it was a huge problem. I was also quite known for how peaceful I was when I slept, making no noises or movements. But suddenly I began experiencing attacks of weird sensations while I slept that caused me to move about throughout the night. Sleep starts also became a frequent occurrence.

Since being diagnosed with Fibromyalgia, my sleeping patterns are all over the place. Sometimes I sleep too much, other times I can't seem to sleep at all. I once went three weeks sleeping 14 hours a night plus taking one or two naps during the day. I would sleep for 14 hours straight, wake up, shower, eat, go back to bed, wake up, eat, watch some tv or read, go back to sleep, wake up, watch some more tv or read, then go to bed for the night. Spring break was a lot like this, but I had a more waking hours.

Then I return back to school and the situation is the exact opposite. Sunday night I went to bed around 1, but I didn't actually fall asleep until a little after 4. On Monday night I went to bed around 2 and did get to sleep until around 6. I ended up skipping my classes for the day because I was so exhausted. I tried to take a nap instead around 2 p.m., but didn't fall asleep until about 4, and woke up shortly before 5.

And then last night.

Last night I went to bed around 1, but didn't really start trying to sleep until 2. I did not get to sleep until 8 in the morning. To top it all off, I woke up an hour later and was positively unable to fall back to sleep.

To make things more interesting, I had my Major Field Exam today which I had to take with only having a measly total of 8 hours of sleep from the past 3 days. I'm not sure how I did, but now I have to turn my attention to my senior thesis paper I need to write by Friday. Ugh, ugh, ugh!

My body is killing me in every way possible right now.

For the record, I am also taking sleeping pills. I take melatonin, magnesium and zinc right before bed, and if that doesn't get me to sleep, I take Temazepam (which I have taken the past several nights). I used to take Ambien which really worked for me, but before I even finished the first bottle, it suddenly stopped working. So my doctor switched me to Temazepam, which also worked splendidly before suddenly stopping, again, before I even finished the first bottle.

Does anyone else seem to build tolerance like this to sleeping pills?

Oh well. I can do this. Sleep is for the weak ;)

Spring Break with My Friend, Fibromyalgia.

So I haven't posted lately because I've been on Spring Break.

And like most college seniors on spring break, I partied on the beach with my friends and drank until the sun came up.

No, no I didn't. I didn't go to the beach as so many of my peers did. I did not go on any road trips to exciting places like California or New York or Florida. I did not go to parties, or hang out at clubs or bars. I did not even visit but one friend, and technically, she visited me. I didn't do any of those normal things which college seniors on spring break do because I have fibromyalgia. I spent the vast amount of my spring break in bed - and that's not a complaint.

While I do point out the difference between my life and the life of my peers, it is not a complaint. My spring break was quite lovely. I enjoyed it. And while I can't bring back any crazy and awesome memories from my break as I'd like to, I was content with catching up on sleep and letting my body heal, even just a little bit.

Of course, it wasn't all fun. Unfortunately, we started the grueling process of getting our roof done, which went on for 6 days straight and still isn't finished. This means that from 8 in the morning to 12 or 4 (depending on the weather) in the afternoon, there was loud banging and lots of talking from the workers. For someone with Fibromyalgia who experiences the symptoms of sensory overload, this can be a problem.

And for me, personally, one of my most dangerous symptoms is the hearing hypersensitivity. My experience with this auditory sensory overload has often lead to muscle twitching, muscle jerking, muscle spasms, tremors, nausea, headaches, increased pain and fatigue, blurry vision, unrelenting anxiety, and various speech impediments. As all of this builds up, it eventually leads to syncope (fainting) and seizures.

So, as you can imagine, while the workers were there, I was in pretty bad shape, experiencing a handful of episodes a day. My parents would move me from one side of the house to the other to keep me away from the noise as much as possible. I had to be escorted any time I walked, so I mostly just stayed in bed, as my brother would graciously keep me company by delving deep into philosophical conversations about any and everything.

Ah, but once the workers finished up for the day, I was at total peace. I may have been fatigued and in pain and with a migraine or headache, but I was still at peace. I was going to bed at 7 p.m. and sleeping for 14 hours. I even took the occasional nap or two during the day when I could manage.

No, it wasn't much. I have no stories to tell my friends of how crazy of a time I had, and I have no stories to pass down to my future offspring about how young and reckless I was, but I still enjoyed it.

Obviously, there is frustration involved in being a 20 year old college senior unable to partake in normal college activities, but at the end of the day, I'm just grateful to be going through this ongoing battle at home with my family and friends, above all else. You see, I know what it's like to be young and fighting for your life in a hospital with no parents, no family, no friends. And while I'd certainly rather be a normal and healthy 20 year old girl, I can still appreciate these small things which are often taken for granted.

My mom was dead set on having me spend my spring break in my best friend's condo, who wasn't doing much of anything herself because she was attending a lab over spring break for extra credit. My mother insisted on sending me there to keep me from the pain of the noise. But no matter how annoying and frustrating the noise was, and no matter how much I love my best friend, the only place I wanted to be was home, with my mom and dad, and my brother and dogs.

And I did just that :)

Hm. Fibromyalgia seems to have an awfully weird way of keeping me grounded.

Generic Symptom Lists

I'm unsure as to how often I'll be writing this week, as it's Midterm week and I'm going to be putting forth all of my energy toward not stressing out too much so that a bad flare doesn't follow. Feeling a bit incoherent today, but here's a little something :)

I don't know if I'm alone in this, or perhaps due to my age and inexperience I simply previously had a very naive  perspective in this regard, but I just don't care for generic lists explaining medical conditions.

When I was first told my diagnoses was "probable fibromyalgia," I, of course, went home and looked it up straight away. What I found was that many internet sources listed the following symptoms: widespread pain, fatigue, sleeping difficulties, and anxiety and/or depression. Some sites would specify in more detail what sort of pain, such as stiffness, joint pain, muscle pain, ect... Other sites would include additional symptoms such as headaches, irritable bowel syndrome, and concentration difficulty.

I remember thinking "Hm. Well, good, this seems manageable." At this point, I was still thinking medications would have me up and out of bed and feeling great again in no time! How wrong I was.

To reiterate, it was probably naive of me in failing to fully grasp the severity of the symptoms, but on paper, it just seemed so much easier and simpler than it actually turned out to be. Truth be told, I really did not think much of the diagnoses. At least not until things became worse, not better, even with medication.

Another grievance I have is how many symptoms are left out of those lists, such as dizziness, disequilibrium, muscle spams, twitches, jerks, tremors, and all of the various sensitivities. Just to name a few. Or that the symptoms of fibromyalgia have the ability to cause additional symptoms themselves.

For example, I, like many others with fibro, experience hypersensitivity to light, sound, and smell (some people also experience sensitivity to taste). This is something often not included in symptoms lists, and I thought I was going crazy when it began. Even more scarcely mentioned are the symptoms sensory overload may cause as a result. One such possible symptoms is syncope, or fainting, a symptom which I have grown to become quite familiar with.

Now, don't get me wrong - I know those generic symptoms are meant to be general and used as a brief overview of what certain medical conditions are like, or entail. I also understand that if you have a certain illness, it's your personal responsibility to educate yourself and do further research.

But let's be realistic here: if someone tells you they have a disease you don't know much about, you're probably going to go onto one of these sites and glance at this generic list, and unless something like paralysis or death is listed, you're likely not going to think much of it. My qualm is that when people do this upon learning I have fibromyalgia, while they think they now possess a greater understanding about what I'm going through, I know that they still have no idea.

What I've learned is that you don't really "get" the sufferings and daily obstacles an illness entails until you take the time to read or listen to those who suffer from it themselves. Sufferers tend to tell quite a different story than generic lists do.

Upon making this revelation, I found myself hanging out in forums of all sorts of illnesses I thought I previously understood. It was quite an eye opening and humbling experience, and I suggest you do the same, especially in the event that you meet someone with any sort of illness.

In depth, count-by-count explanations about "A Day in the Life" of someone with (insert illness here) is often such an enlightening experience, whether you can relate to it or not (which probably explains the success and popularity of The Spoon Theory). Even articles attempting to explain the effects of these symptoms can't begin to suffice compared to a raw explanation from a sufferer.

In the end, "widespread pain" doesn't begin to cover the nights where pain prevents me from falling asleep for hours, or how it wakes me up crying, or how the shower can sometimes be one of the most painful and stressful experiences of my day. It doesn't explain how it can keep you bedridden for days, leaving you to feel like an empty shell of the human being you once were.

"Sensitivity to Sound" doesn't begin to describe the inconvenience, frustration, physical discomforts, embarrassment, and even danger of the time I fainted at a conference in the middle of a speech by my favorite speaker.

"Concentration Difficulty" can't truly describe the anxiety and anger of a weakened word recall when my professor calls on my during class, or the embarrassment of constantly forgetting entire conversations, or a diminished comprehension leaving me unable to even read or write a sentence at times.

I could go on, but I think you get the point. If you truly care to understand how a person suffers due to illness - if you truly want to understand what it's like to spend a day in their shoes - then just listen to them. Don't undermine their agony and distress by visiting sites listing symptoms written by authors who've never experienced the symptoms themselves, and then go on assuming you know all there is to know about their day-to-day struggles. These lists just don't do the plight of the sufferer justice.

Once you make an honest effort to understand someone, I believe you'll find that a multitude of opportunities to learn, grow, and connect with others will present themselves.