Sleep is the number one determining factor of how bad the symptoms of my autoimmune disease will be the next day. I've also discovered that it is also a fairly good indicator of how active my autoimmune disease is at any given time.
When I first went out of work on disability in 2008, I was going to bed at 11pm and not able to get out of bed until noon the next day. Thirteen straight hours of sleep. Looking back I can now use sleep as a measuring stick of sorts; how much sleep my body requires is directly proportional to how active the disease is.
Now this is important to me because there are plenty of days that seem to be exactly like the day before. Week after week, month after month, each day is not a whole lot different than the day before. This makes it a bit more difficult to notice progress.
When I look back to how much sleep I needed back in 2008, it gives me both comfort and hope. Somewhere, somehow, slowly but surely, I shaved a few minutes here and there off of the amount of sleep my body requires. In itty bitty increments over the course of years, I've reclaimed FOUR hours of my life each day! Most recently I noted that since starting the new medication Xeljanz 2 1/2 months ago, I am requiring about 1/2 hour less than before I started the medication.
Charting your sleep patterns can be helpful for several reasons. Number one, as I have illustrated, you can miss the slow subtle changes that add up over a long period of time. Second, it can give you an idea of what issues stand between you and truly restorative sleep.
I rarely have trouble falling asleep. My problem had always been staying asleep. I suffer from severe bladder spasms. I'm not sure if people with Fibromyalgia or Chronic Fatigue Syndrome (CFIDS) have this type of symptom. I'm not even sure if this is an autoimmune disease symptom! But it is a Joanneproblem for sure. About 20-30 minutes after laying down, just when I'm all warm and snuggled in, just at the brink of drifting off to sleep, BLAM! My bladder spasms and I have to get up and go use the bathroom. There is no ignoring it. There is no falling back to sleep until I answer the call. Then, I am awakened by a spasm approximately every hour and a half. When I am in deep sleep the spasms don't bother me, but as I come back to a lighter stage of sleep, instead of moving back into the deeper stages, BLAM! I am yanked out of my slumber by yet another spasm. Most nights the total trips to the bathroom is six. On a bad night it can be ten. Now, guess how well I feel the next day?
I see a urogynecologist. He's been helpful. His latest help comes in the form of a cream that has anti spasm medicine in it. I can only use that every other night. The first night was two nights ago and I was overjoyed that I was only awoken three times that night, as well as last night (which was a non-medication night). Tonight I will use it again.
I love that this is really targeting my problem directly because until now I have been using Xanax and Flexeril AND a sleeping pill. AND STILL waking up every 90 minutes! (By the way, it's never safe to take multiple medications for sleep unless you do so under the strict supervision of your physician and of course YES I did!)
If I can get some QUALITY sleep for a real period of time, not just a decent night here and there, I will give my urogyn A KISS! (OK, maybe it will have to be a chocolate one, but still), you know what I'm saying right? Sleep can make or break you!
Now while staying asleep has been a problem for years, there is another sleep issue I've been dealing with for the last year. Thanks to menopause, I am now quite susceptible to insomnia. And if it's a night where insomnia hits -- I won't be able to sleep until 3 or 4 in the morning! The repercussions of a night like that are not only just the usual flu-like feverish feeling, fatigue, joint pain, muscle pain and brain-fog, but add in nausea and a killer headache and feeling like I might pass out if I'm standing up!
Here are a few things that I've noticed about sleep (since I am obviously obsessed with the topic) that I thought might help you. #1 (I will not bore you with the obvious things listed in every article you've ever read on sleep). And this is important, if I stay awake past 11pm I am almost certainly going to get a second wind and won't be able to fall asleep until 3 or 3:30 am, (no matter how many pharmaceuticals I take). #2, My body reacts very strongly to light and sound. There is almost an exact moment where I go from thinking about bed to becoming sleepy. If my senses are attacked by light or sound once that moment arrives, I can easily be jolted into insomnia. #3, conversation can be tricky for me at this point. If my dear hubby talks too loud (and I say this lovingly, but he does!) that can tip me into insomnia, as can the content of the conversation: anything where there may be a difference of opinion, or something potentially upsetting, just try to steer clear. And lastly, #4, My nighttime ritual of teeth brushing, face washing, face cream slathering, and changing into my pajamas, has also proved to be a surefire sleep disrupt-er. So, now I go upstairs and do all of that at least an hour or so before my bedtime. Then I go back downstairs, dim the lights, lay back, cover up with a blanky and either watch a show with my husband or read a book.
Sleep is important to everyone, but to people living with chronic illness, it can be life altering!
Sleep well my friends. Until next time.