My Love/Hate Relationship With Sleep

My Love/Hate Relationship With Sleep

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Awww, don’t I look so peaceful asleep with my puppy in this picture? Well, pictures can be deceiving. Sleep is usually a tough thing for those of us with chronic pain/illnesses. Typically, we suffer from painsomnia, or an inability to sleep because of pain, which leads to our being exhausted all of the time. Many times our diagnoses come with fatigue as a symptom so that even if we are able to get a full night’s sleep we still spend the next day too exhausted to function. Our bodies need a lot of sleep to heal.

I have the diagnoses of fibromyalgia and sleep apnea, both of which have fatigue as  a symptom. I also have the diagnosis of narcolepsy which basically means I could sleep a week and my brain would still be telling my body that I had NOT slept in a week and needed to sleep immediately, as soon as I woke up.

I am on a medicine to help me stay awake. Basically, without the medicine I sleep an average of 21 hours a day, with the medicine it is more like 14-16. When you add painsomnia in there I sometimes get as little as 2-3 hours. The medicine does not relieve the feeling of being exhausted though. I spend every minute of every day fighting to resist napping and muster the energy to get even one thing done. I have tried every medicine for narcolepsy there is except for one. To try that one, I must come off of the meds I am on for my fibromyalgia and depression because, when combined, they have the nasty side effect of making you stop breathing.

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This is what I usually look like asleep. Sexy, huh? I wear the mask for my cpap machine whenever I sleep. After 10 years of wearing it, I don’t even notice anymore. I made myself wear it in the beginning because my sleep study revealed that I was having episodes where I stopped breathing 50 times an hour. Since each episode increases my chance of stroke and heart attack, I was very serious about training myself to wear it. The black thing around my chin is a chin strap. Duh, obvious, but I started opening my mouth and snoring which decreases the effectiveness of the cpap. I tried a mask which covers the nose and mouth but I just could not handle it. I am claustrophobic and it gave me panic attacks. Hence, the chin strap which is not as effective as the full face mask but you do what you gotta do.

So, every 30 days I have to get this narcolepsy medication filled which gives me about 5-7 more hours of being awake a day. I cannot fill it until the very day that I take my last pill because of some silly law. My pharmacy is usually out of the medication because even though I have been filling it every 30 days for 2 years they cannot anticipate that I will fill it again in 30 days. This means the pharmacy has to order the medication which usually takes at least 24 hours to arrive. If I happen to run out on Friday then I have to wait until Monday afternoon to get the medication. On holidays I have went as many as 6 days with no medication. It usually takes a couple of days at least for the medicine to build back up to therapeutic levels and start working again. That means I DID sleep a week, and yes, I still woke up exhausted. I missed out on a lot of holiday events as well.

So, yes, it is complicated and my DRs are constantly trying to balance which meds will help with which condition and which symptoms are the most important to control. For me, I would rather be asleep or exhausted than in excruciating pain, and it is excruciating. Does this mean I am happy with the way we are treating my symptoms? Heck no! I have two kids that thankfully are teenagers and mostly responsible enough to get themselves up and to school in the mornings. If I am lucky I get up early enough to try and kiss them (teenagers, remember?) and tell them to have a good day. I sleep a lot while they are in school and then struggle to stay awake in the evenings so I can at least see them when they go from the kitchen to their bedroom. Lol, hanging with Mom isn’t cool anymore.

I miss my life, and I hate that I am sleeping through so much of it. I feel guilty that I am not more active in my kid’s lives. Before I got sick, I was on the go all the time and too busy to sit down for a minute. I was involved in the boys’ schools and sports and we were always off on one adventure or another. Now, my life is spent in bed, either bored to tears, or sleeping. I am hopeful that one day there will either be a cure for one or more of my conditions, or a new medicine that will help me function better. For now, I am doing the best that I can and praying my kids understand.

**I hope this article contained some useful information for you on fibromyalgia, sleep apnea and narcolepsy. I am not a medical professional and nothing in this article is to be considered medical advice.

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