The Long Lonely Nights

One of the biggest challenges for those who live with mental illness is sleep. This may come as a surprise to some because from the outside it looks like people with mental illness sleep all the time. Some people think my daughter sleeps too much. This is a logical conclusion because when they try to call her during the day she’s asleep. I’m constantly being lectured about how much she sleeps. It’s exhausting and frustrating to listen to. I’m so tired of explaining why she sleeps when she does that I’ve stopped trying. My daughter lives with bipolar depression and anxiety with panic attacks. When she is manic she has severe debilitating OCD symptoms. She can’t walk across the carpet. She sleeps on her bed with no sheets. These are just a few of the frustrating ways her mania manifests. Her anxiety disorder is at the more severe end of the spectrum and drives her to have panic attacks and suffer from a condition called agoraphobia, which is a fear of leaving the house.

Alexa’s anxiety rises sharply every night starting around 9 pm. In addition to her anxiety this is when her bipolar swings manic. The combination leaves her wide awake all night. Do you live with this? If you do then you’ll know what happens next. My daughter is up all night alone. She listens to music and reads, and she tries very hard not to have a panic attack. She used to have severe panic attacks all night. How many nights have I sat up with her holding her hands, wiping her tears while the monsters in her head waged war? More than I can count. By early morning her anxiety melts enough that she can start to relax. She reads for a couple of hours. Eventually, around 8 or 9 am, exhausted from fighting the demons in her head all night, she falls asleep. On a good day she’ll sleep until 4 or 5, which gives her 7-8 hours. On a bad day she wakes up at 2 or 3 exhausted and feeling like she’s waged a battle and lost. But, whether she sleeps 6 or 8 hours she feels embarrassed and ashamed when she wakes up. She’s ashamed of herself for sleeping all day. She’s embarrassed about being up all night. She feels remorse for keeping me up during the night, and she’s frustrated because she knows that once evening rolls around her anxiety will creep and the cycle will begin again. Rinse and repeat. If this happens to you I want you to know that you’re not alone. I want you to know that you are not a bad person or a lazy person. This is not a behavioral issue. This is one of the difficult parts of the medical illness you live with every day.

Nights like these are long and lonely. Alexa is wide awake when the rest of the world is asleep. There is no one to talk to. No one to watch a movie with. This is the most dangerous time for those fighting this disease. The weight of depression becomes crushing. Those suffering are tired of being numb to all positive feelings. Desperation sets in and this is when some start self harming. Cutting and other forms of self harm are desperate attempts to prove to themselves that they can still feel something even if it’s pain. Ask a person who lives with clinical depression what it’s like to live with indifference 24/7. Their answer might surprise you. It will also help you understand why people who seem to have it all commit suicide. When her panic attacks were at their highest, and she was fighting against suicidal ideation, Alexa would FaceTime with a member of our family who would spend hours during the night talking her down off the ledge while I tried to get some sleep. They say it takes a village to raise a child. Well, I’ll tell you, it also takes a village to be a caregiver for someone with mental illness but unfortunately we go it alone. The Village doesn’t show up for depression, bipolar, of any other mental illness. Alexa and I are fortunate because we have a very supportive family who will help out, and on those long lonely nights it’s something neither of us takes for granted. We are so very grateful to have them.

If you are living with mental illness and you are battling the long lonely nights please remember you are not the only one who is is going through this. You are not a terrible person. You are not being ridiculous. It’s not “all in your head” and you can’t “snap out of it.” You are not weak. You are not a crybaby. You are a warrior fighting for your life all night while the rest of the world sleeps. I know the night gets long and lonely, and the battle makes you weary. Here are some suggestions that have helped some folks battling night monsters:

  1. Try meditation. There are loads of free apps with guided meditations. My personal favorites are Breathe, Unplug, and Soulvana. Meditation is wonderful for quieting anxiety.
  2. Try indoor gardening. I know this sounds crazy but hear me out. You’re awake. You’re not going to sleep anyway. Rather than lay in bed fighting this reality try to reframe it. Make use of the time. Nighttime can be peaceful. You can buy indoor gardening kits and grow everything from herbs to vegetables. If you don’t eat them, grow them anyway! Give them to your neighbors, family, and friends. Donate them to a local food pantry. Give them to the homeless. Bonsai trees are wonderful for helping you to center your thoughts and focus on something external rather than the internal noise in your brain. Gardening is proven to relieve anxiety, lift depression, and calm mania. Give it a try!
  3. Color. Adult coloring books allow you to direct all your energy and focus onto the page in front of you. Put on some music and color.
  • If you’re a caregiver like me, I know how exhausted you are. We live in a constant state of hyper awareness. Fearful of what our loved one is doing or may do while we sleep. We sleep with one eye open, or we don’t sleep at all. The most important thing to remember is that we must take care of ourselves first. It’s like when the plane hits turbulence and the oxygen masks drop. You are supposed to secure your oxygen mask first before you help anyone else otherwise you risk dying and not being around to help anyone at all. Its critical to get your sleep. Set firm boundaries. When my daughter came home from her last hospitalization we made an agreement. Going forward she would try to manage her anxiety during the night utilizing the coping skills she learned while in the outpatient program. This is her first line of defense. When that fails she can reach out to me or our family for help. I have to say she has been doing a fantastic job. Her new medication regime is working very well and allows her to sleep soundly, through the night, without night terrors. This past month her symptoms worsened and she found herself battling the long lonely nights again. But this time she used the coping techniques taught to her by her therapist. She reads and watches movies. She has woken me only a handful of times. She saw her doctor recently and her medication dosages were tweaked. It’s been two days and the improvement is dramatic. It gives us hope. It’s a tiny flicker of light at the end of this long dark tunnel. I say this because again, if you live with this I want you to know that it does get better. It will not be this way forever! But more importantly, I want you to stop berating yourself. Don’t listen to those who lecture you and tell you to straighten up and toughen up. You are strong. You are stronger than those who tell you that you’re weak.
  • For those who do not live with this I thank you for reading this post. I hope it helps you understand this disease a bit better. I think most people on the other side sincerely want to help. I see you posting memes on Facebook telling people to stop bullying. I see you sharing the suicide hotline. I know you care deeply and want to help. Here is what you can do:

    1. Stop judging. Stop lecturing. Stop trying to ‘fix’ it. This is a symptom of a physiological illness. These people are not assholes behaving badly. They are suffering. They need your understanding. They need your patience.

    2. If you are in a position to be up at night, and you know a friend, relative, neighbor living with this, offer your companionship one or two nights a week. Having someone to sit up with and pass the night is so comforting. Offer to come over and then, most importantly, just be there. Don’t try to fix the problem. Don’t offer your opinion or advice. Offer to play a game of cards or monopoly. Offer to make some popcorn and watch a movie. Or, just sit beside that person and hold their hand. They may be fighting the battle for their life inside their head and your hand is the only thing they’ve got to hold onto. Offer to pray with them but do not, under any circumstance, try to bring them to Jesus or save their soul. You will not be helping. You will instead only reinforce all the negative horrible thoughts running through their mind. I’m not saying you shouldn’t pray for them. Pray for peace. Pray for relief. Pray they are given the strength to keep fighting. But do this on your own. Now is not the time to force your religious beliefs on this person. When you see someone clutching their chest having a heart attack, do you grab your bible and start reading to them? No. You don’t. You call 911, you put an aspirin under their tongue. You perform CPR if necessary. And when that person is lying in intensive care in the hands of a medical team trained and skilled for this issue, then you retreat and pray. Mental illness is no different. When someone is having a mental health crisis holding them and letting them cry with no judgment is CPR. Staying up with them and offering your companionship is first aid. Mental illness is a disease like any other. It’s time to stop dismissing it as a moral character failing. If you want to help, if you want to stop suicides of friends, family, and neighbors, then it’s time to step up and be the village.

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