It is 9:30 at night and time for bed. I am moving through a pea-soup haze of heavy fatigue and I so long to just lie down and slip into peaceful oblivious nothingness for 7 or 8 hours. But that will not happen. First I have to mix up the medication that I must take twice this night and every other, in order to achieve what I hope will be at least two 3-hour blocks of the full sleep-cycles. Then I fill the water-chamber of my breathing machine. I put splints on each of my arms, and the tight elastic band around my head which prevents my mouth from dropping open when I do become relaxed in brief sleep. If that happened, the air pressure which keeps my airway open at night, would flow out through my mouth. I take my medications and then I put on my head-gear and facemask and position 3 pillows, all to ensure that I do not stop breathing and die before morning. I push the proper buttons, and finally, I can lie down. After 30 minutes I hopefully begin to drift down into the beginning stage of sleep. And wake up after about an hour.. Hands and feet numb, I shake them out, and move around, and turn onto my right side. And sleep another hour. Right shoulder in pain, right arm asleep, I move around and get sensation back, and turn onto my back, move all the pillows again, and then the coughing begins. I forgot to press the humidifier button and my mouth and throat are parched and irritated. I take a sip of water and use the saline inhaler, move the cradle pillow back under my head, to avoid neck strain on the disks of my cervical spine, and try one more time. I sleep another hour, and the medication is out of my system. The medication is for my narcolepsy. Narcolepsy is a neurological disorder and it is a misconception that people with narcolepsy sleep all the time. We actually cannot sleep, therefore we are sleepy all the time and our bodies go into brief and unwanted sleep states and partial sleep states at all the wrong times and are unable to get into those sleep states needed for real rest at night-time without the help of medications (the one I take costs $3,999/month, I am blessed to receive assistance in paying for it through a grant program).
I get up, go to the bathroom, and come back to go through the same routine of placing on all the gear, taking the second dose of medicine ( it is quickly metabolized and excreted through the lungs in breathing, therefore it only provides about 3 hours of sleep per dose). After the same waking, turning, and other disruptions I wrestle my way through the second half of the night and wake up, exhausted.
During the day, I push through what is required of me. Over time, when sleep has not been deep or consistent, and fatigue weighs heavy for months and years on end, pain tends to develop in the body. Most of the time someone diagnoses this as fibromyalgia. Sleep medicine now admits fibro is probably rooted in an undiagnosed sleep issue and some are even classifying it as a sub-clinical form of lupus (autoimmune). That the body would turn upon itself with destruction certainly seems consistent with what sleep disorders make you feel like. Continuous pain wears on a person, and the unrelenting cycle of pain, interrupted sleep, more pain, more disrupted sleep, results in very real mood issue from anger to depression. We often run on adrenaline alone for many years, which burns out the adrenals, and dis-regulates every chemical process in the body. There is a certain “wired tired” that develops and makes you very edgy and irritable. It can be so extreme as to cause Bipolar disorder. Everyone knows how they get when they are tired and just need a nap to refresh them. A nap is seldom refreshing for me. Though still necessary as a break from being up and relieving the continuous straining of my entire body in its effort to push through the day. A nap at least allows those struggling muscles to relax for 30 minutes. Sleep seldom comes during nap time. Under these circumstances Inflammation can become an issue, joint issues soon develop. It is not uncommon for people with a “broken sleep apparatus” to develop spinal degeneration because the supporting muscles have weakened. And with the inflammation at the joints, nerve-endings become pressed and pinched, resulting in nerve pain and numbness an other neuralgias like pins-and-needles sensations and sudden sharp stabbing pains. Poor sleep also lends itself to hypertension, and increased risk of stroke.
This does not even begin to address the effects of such continual exhaustion upon my thought processes and ability to think and remember. I have to write things down a lot. Since through-out the day I may have many moments of “micro-sleep” where my brain goes into a sleep state while my body is in motion, impressions and observations during this time may be disjointed and only partial to begin with, and the brains’ filing system is hardly working at peak performance with the constant blips. So storage is disorganized and incomplete when something happens, and when an attempt is made to retrieve the memory, it can be a little like that phone number you jotted on the napkin but omitted the name and now you know it’s an important number, but don’t know whose it is. Not being able to count on your own mind comes with a whole set of frustrations and concerns of its own.
There is a lot of loss that comes with chronic illness. Loss of identity. Loss of livelihood. Loss of friends who don’t come around anymore because they can’t conceive of what you are going through, and judge you to be a deadbeat or think you are just being a “stick-in-the-mud”. When you barely have the energy to do the minimal things life requires, it can be exhausting to try to educate all of those around you, including some of your doctors.
I have been living this way, more or less, now for almost 18 years. (Undiagnosed most of those years). And I am weary beyond any capability to articulate it, and I am a fairly articulate individual. Every cold, every bug, every stress, can be a major burden to someone who is already under a crushing load. And I haven’t even gotten (officially) into old age yet, though frankly when I was 34 I knew 70 year olds who could run rings around me. That is how much this illness takes from you. Imagine how it makes me feel when someone says “oh, come on, you’re not even 50, if you’re this bad off now, how are you gonna be when you really get old?” My thoughts at that point are, frankly: 1) “I probably won’t make it that far” and 2) I sure hope I don’t have another 30 or 40 years of this to look forward to”. That can seem extremely daunting. Statements like this tend to make us feel like it is someohow our own fault we are struggling so. Or at the very least, that we ought to be able to handle it better. All I can say is, as much as I wish the offending speaker could understand, I wouldn’t wish it on them to ever experience it so they could understand.
As a Christian, I know that there will be a day when I will find relief. I long for that day with great anticipation. That does not mean I don’t appreciate the blessings that I have here and now. A wonderful husband and family, friends. The Bible tells me of a coming day when I will, indeed, finally lay it all down, in a place where I will again be able to once again work and never tire in my work. Who wouldn’t want that?
People who sleep well don’t know that when they say “I’m tired” and I say “I’m tired” we are talking about two completely different things. When they say “I’m tired” they know they will stop feeling that way when they get caught up on their rest. For me there is only “tired”, “more tired”, “slightly less tired” and most of the time “exhausted”. People, after hearing that you feel bad, so want to hear later that you are feeling better. After a while, if they don’t hear that from you, they conclude you just want people to feel sorry for you, and that no one could possibly feel “that bad all the time”. I am happy for those people because it means they don’t have to know what it is like. Narcolepsy is a very isolating illness. Because even if you don’t let it stop you from going out and interacting with people, it makes it that much harder to do so, and walls of misunderstanding (on the part of others) and walls of defensiveness and resentment (on the part of the sick person) tend to come up over time.
Much of my socialization is by e-mail, because I can do it in comfort, and stop when I need to, and read a response some other time. Gone are the days of the long conversations and visits. It is difficult to sit in one position for long, due to numbness and pain, so I am constantly restlessly moving. This, too, is a cycle. When you are tired, it doesn’t pay to pace. But I do. I am growing weaker, in my intolerance for strenuous activity. It does not come as a surprise but it is alarming. Even my sleep doctor sent me to a neuro specialist because he was concerned. But sleep medicine being still in its infancy, I’d say he maybe just hasn’t met someone who has already been living with narcolepsy for nearly 2 decades. I would be curious to know others, myself. But it’s a funny thing about support groups; if I can forget for a few minutes how bad it is, I don’t want to spend that time listening to how bad it is for someone else. That doesn’t make me cold, that just makes me a survivor. You can’t save someone who is drowning by letting them grab on and pull you down with them.
I am not a medical doctor, or psychiatrist. I am a retired RN who suffers from Narceolepsy, Cataplexy (an “extra” sleep-related disorder that some narcoleptics get, which causes sudden loss of muscle tone ranging from droopy eyelids to complete collapse, often triggered by strong emotion or stress) and sleep apnea, fibromyalgia and sensory, mood and memory issues. What is written here is subjective and based solely on my own experience and educated conclusions.
There are links in my sidebar to blogsites devoted solely to narcolepsy which I have placed my blogroll for the benefit of readers who wish to learn more about the condition, as I do not wish to dwell solely upon the topic as a theme of this blog. If a friend or loved on in your life has this disorder, I promise you, they will appreciate it if you learn more about it for their sake.
And to all those out there who live with narcolepsy, I pray God give you rest.