My sleep/wake cycle has been completely messed up ever since I stopped working fulltime back in February. For the most part I don’t mind it because I have always identified myself as a night person, and without having to be somewhere first thing in the morning, I’ve been telling myself it’s alright if I’m up late. Problems arise, however, whenever I have anything scheduled for the morning or early afternoon such as a doctor’s appointment, meeting a friend, or accomplishing time sensitive errands. With my sleep condition (narcolepsy), I feel unpredictable if I have an early commitment. Try as I may to go to sleep at a reasonable hour, frequently I am troubled with high anxiety and am unable to shut myself down. Even if I do get enough sleep, I have severe issues with waking up which I mentioned in previous blog posts. The severe fatigue makes it next to impossible to wake up promptly (even with the help of alarms). I find I’ve unknowingly turned them off and go back to sleep. I have completely missed appointments and commitments this way and it’s a terrible feeling. I have become undependable and I feel the situation has become out-of-control. Very often I feel that there is a giant disconnect between what I want to have happen (i.e. attend the appointment or commitment) versus what actually happens (i.e. missing the appointment , or staying in bed).
An example that comes to mind, which frequently happens to me, occurred today. Last night I went to sleep around 3am, after trying to go to sleep at 11pm. My mind was racing and my anxiety was high. I was eating poor diet choices to comfort the anxiety (a topic for a different post), and I am sure sugar played a role in my lack of sleepiness as well. I set my alarm for 10:30am since I had a 1:20pm doctors appointment but when my alarm went off it felt like it would be impossible to get out of bed at that time, and I moved the alarm to 12pm. I thought to myself that it would still give me enough time to take my medicine, eat, get dressed and get to my appointment. The next thing I know, I awake, look at my clock and it’s 2:10pm. The most intense feelings of shame and guilt come over me…feelings I’ve become far too familiar with these days.
It becomes the second time I missed that particular doctors appointment and in addition to being charged for it, I have to explain to the practice what’s going on and why I’ve been a no-show for two appointments in a row. Cue the anxiety, guilt, shame and stress for the rest of the day. Every time I think about the situation I get sick to my stomach. This isn’t a one or two time thing, it has happened numerous times before. Sometimes I even wake up with enough time, have breakfast, and accidently fall back to sleep, missing my commitment. I immediately get anxious because I know that I’m going to have to explain to someone what happened. I feel guilty because part of me feels that this is something I have control over, something I’m not working hard enough at trying to wrangle. I’m ashamed and embarrassed I’ve become this unreliable person in my family & friends and appointment’s lives. My stress is induced by knowing that something isn’t right with me, because this isn’t an issue that anyone around me seems to have.
The answer is not as simple as to “suck it up” or “get on a 6am – 10pm wake cycle” because even when I’m excited to do something, or working a job I love, I’ve been struggling with waking for years. I could be told that I’m going on a tropical vacation in the morning and all I have to do is wake up, and I’ll be driven to the airport in a limo to fly first class to the Bahamas, I would still suffer from this problem. Side note: In that situation I would probably try to stay awake all night just so I didn’t oversleep.
The irony/awful thing about my two missed doctors appointments is that it’s the practice for the doctor that manages my sleep condition. He has tried to give me recommendations before and other than medication to stay alert, nothing else has helped me. Something I’ve figured out for myself lately, if I know I need to wake up early but don’t want to stay awake through the night, is to have my husband wake me at 5am when he leaves for work, take the alert inducing medication, and sometimes it helps me not to feel so trapped by the drowsiness when I awake the second time. It has worked before and from time to time I ask him to wake me. For appointments in the early afternoon I do not think to ask him to do such a thing because I guess I have been in denial how often I have issues. I’ve missed some very major things, such as people helping me to do things, to not being able to help out others.
I have found lately that if I miss a major appointment I get a splitting headache for the rest of the day, if not a full blow migraine. All of the negative feelings and emotions stay with me until I can apologize to the person/people I’ve let down and as a result, it’s maddening. I feel like it is something that I should have under control by now. I’m 29 years old and I don’t find it to be acceptable behavior; When I have an appointment, I need to be there. Not being able to get out of bed isn’t a good excuse and I realize that, but it’s so much more than that…I feel like a prisoner in my own body when “it” hits me.
The bottom line is that I feel trapped in a brutal cycle I don’t yet understand fully. I try to be mindful of the clock, my meds, what time I schedule appointments, and so on, but sometimes things get messed up and I find myself going over and over in my head how I’m going to apologize to the receptionist and the doctor, or my family, friends…anyone.
My next step is to do some more research into this subject as well as consult with sleep specialists because I know I’m going to continue to have the same problems if I don’t make changes soon. I’ve dealt with this for years and since it is progressively getting worse I am really concerned. The people around me don’t seem to understand it, but since chronic fatigue is a common side effect of chronic pain, I thought you all would.
Sending you healing vibes,