When I say that I deal with pain every day, I think many people can relate. We all have little aches and pains that plague us throughout our lives; that knee injury from highschool, back and shoulder pain from stress, or recurring headaches that can’t be explained. Even chronic pain has become a widespread issue affecting more than 100 million Americans, while remaining an invisible illness. It doesn’t receive attention because there is no way to compare levels of pain or measure how much it improves or gets worse. We all can believe our pain is worse than others’ but that doesn’t help us feel better.
I assume that for anyone dealing with pain, it can cause severe exhaustion. As a person with narcolepsy, when I have a headache or something that hurts, I am constantly trying to save face and continue functioning in the day to day. When I can finally sit down alone and stop pretending that I’m okay, the exhaustion of putting on that act sets in and I sleep. But its not restful sleep, I often awake again and again in pain so when I wake up in the morning, the cycle starts all over again. How many of you can relate to this cycle? What if I told you there is something you can do now that will reduce or even remove that pain? You don’t need to see a doctor and it won’t take much time.
Continue reading “Relieving Pain Naturally”
Prayer for Freedom from Suffering
May all beings everywhere plagued
with sufferings of body and mind
quickly be freed from their illnesses.
May those frightened cease to be afraid,
and may those bound be free.
May the powerless find power,
and may people think of befriending
May those who find themselves in trackless,
the children, the aged, the unprotected–
be guarded by beneficent beings,
and may they swiftly attain Buddhahood.
This prayer is used in meditation sessions to help give clearer focus to the meditators’ intentions. This always rang true to me, even before I discovered meditation because I can identify with each stanza. Since my diagnosis of Narcolepsy with Cataplexy, at times I have felt plagued with suffering, frightened, powerless, lost, and unprotected. But I am working hard not to dwell on that past, and to focus on the now. Sure those feelings still creep up, but I have found ways to take back my power. Here are some of the tools I use to fight these negative feelings. I am always open to trying new things, so if you have suggestions please let me know in the comments!
- Positive Affirmations
- Emotional Freedom Technique (EFT, or Tapping)
- Creative Hobbies
As we all know there is no cure for narcolepsy. But we can always try our best to find remedies to help us enjoy our lives to the fullest. I hope you will try some of these out and see if they have an impact on how you feel.
Some days I feel so low I just want to lay down on the floor. It’s not just to have a nap, although sometimes I need that too! I used to think this was just a sign I was depressed, but now I see it as a message from my body.
Continue reading “Yoga with Adriene”
An elderly Burmese man was dangling his parasol from one finger while he placed his hands on his back and swiveled his hips in a circle, stretching. I felt myself smiling. Another middle aged couple were barefoot in the grass performing some exercises together in the morning breeze. Young boys on bicycles whizzed by and plenty of locals were relaxing by the water on shaded benches.
Today I set out on a walk having no idea where I wanted to go. It was early and I wanted to take advantage of some cool air before the sun burned through the haze and turned the sidewalk into a human frying pan. I set out around the lake, focused on my breath, and tried to let the thoughts that entered my mind just pass on through. I smiled when the locals smiled at me. I greeted the young boys giggling at my shorts sending them into even bigger fits of laughter. And I struggled to find my center.
Continue reading “Mindful Photography”
I have tried to start with the easy stuff. Not easy to do, but easy to swallow and say, okay this is simple enough I’ll at least try. And most of these are beneficial to anyone and everyone, regardless of if you have narcolepsy or another illness or if you are the healthiest person in the world! There are plenty more to talk about.
But not everything I have done to radically change my life has been so simple. Sometimes to get radical results we have to make radical changes. The biggest one, I know many are resistant to or have some reason that it is not feasible for them, so I will not judge you if this is not for you. But even if my way isn’t the way for you, please believe there is a way for you too! Continue reading “Going Keto”
Maybe the most important lesson I have learned about feeling better, is just to love myself. I’m not going to lie and say it’s easy. But I do think this is especially important for people with narcolepsy. I have ups and downs and I’m constantly working to try to do it more consistently. Its easy to get into negative patterns and tear ourselves down. It takes a lot of practice to reverse that so that we are consistently giving ourselves positive messages.
As a narcoleptic, I have had years where I let the diagnosis consume my life. Maybe you can relate. Some of those years I hardly remember what I did or how I even managed to get by. Continue reading “Love Yourself”
Maybe at this point you are thinking about trying the keto diet out for yourself. You should be feeling positive about your future and believe you are ready to take the plunge. If so, that’s great! Go for it! If you are a bit more hesitant, here is my advice.
- Start with sugar. Eliminate sugar from your diet. First the big stuff, like sugary beverages and sugar filled deserts. Later you can start reading labels and finding there is sugar hidden in more things than you thought.
- Increase your water intake. For every sugary drink you would have consumed, have at least 24 ounces of water.
- Begin removing carbohydrates, but don’t do it overnight unless you are prepared to replace them with lots of fats! Just cut down on the bread you eat. Cut out things like rice and other starches. Try only eating carbs in the evening and see how your energy level increases throughout the day. Remember to eat lots of green vegetables.
- Start to track your food intake. Use an app like MyFitnessPal. In the beginning its helpful to weigh your food or measure it to get an idea of what you are really eating. Most of us have no idea what we are consuming. Over time, you will need to measure less and less and you get used to seeing the quantity of food you put on your plate and know the macro nutrients it contains.
- Continue to use positive affirmations and gratitude to keep your mental state ready for this big change you are about to make. Reassure yourself that you can do it, and you are worth it. You will do this and you will feel amazing!
Sometimes I think about how much having narcolepsy has affected my mental state. It is always on my mind. It is always a limitation. I can read all the tips for wakefulness in the world and work on my sleep hygiene but it doesn’t matter unless I decide to change my own health. While I can’t cure narcolepsy and I no longer take stimulants to keep me awake, I have learned how to treat narcolepsy naturally. And I trust that there is a mind body connection that I can tap into to improve how I feel. Today I’m going to tell you about this silly thing I like to do in my mirror as a natural narcolepsy treatment.
Positive Affirmations. Maybe you think they are wacky or stupid or maybe you just haven’t heard of them. But what would it hurt you to try them out? You can say anything that helps you feel better. It isn’t going to change that you are narcoleptic, but it can help to change how you feel. Often I find I am angry with myself. It’s impossible to keep up with what I believe I should be doing. I have to accept how I am. I also don’t want to feel sick just because I have a diagnosis or believe I am sick. I try to use affirmations to overcome this type of sleepiness. I like to say, “I believe in myself. I am confident and worthy. I am strong. I can do anything. I am not tired. I am not lazy. I am enough. I am healthy. I am getting healthier every day.” Comment below with other things you like to say to accept your body!
Louise Hay has lots of great advice about Affirmations for Health
Here are some of my favorites:
- I am constantly discovering new ways to improve my health.
- My body is always doing its best to create perfect health.
- I lovingly do everything I can to assist my body in maintaining perfect health.
- I make healthy choices. I have respect for myself.
How many of us feel guilty when we aren’t able to do all that we think we should do? I don’t think you have to have an illness to have this experience. Whether it’s commitments at work, with your friends, or with yourself, sometimes you just aren’t up for what you have planned. Most of us tend to cut out what we planned to do for ourselves to not let others down. But if we don’t take care of ourselves, we won’t be at our best to do our jobs or to be a good friend. PWNs (People with Narcolepsy) can relate to going out with friends even when we are too tired, and later having almost no recollection of what we talked about or if we even asked appropriate follow up questions or listened to our friends at all. In these cases, our friends would have been better off if we had stayed home.
We have to learn to accept our limitations. My current challenge is to put a positive spin on it. I don’t want to say, sorry I can’t I’m too tired. I want to be able to say, “Maybe next time, I already have plans.” If they ask I can explain, “I am having a self care night. I’m going to soak in the tub, read a book, do some yoga or meditation, and go to bed as early as I want.” If they are a good friend, they will understand.
Even when travelling, I have to remind myself I can rest. I don’t need to go to every site on the top 15 things to do in Bangkok. When I was there last week, I honestly didn’t go to a single place on my list. I had caught a cold, a simple cold. I know if I had to work at a traditional job, I would have gone to work and functioned as well as I could. But this time, I gave myself permission to rest. I went out and ate steaming hot curry soups and drank delicious tamarind juice. But I didn’t push myself. I walked around near my accommodation and tried to get a feel for the area. I found a rooftop garden in my hostel and relished the moment. I drank a ton of water, and just took care of myself. And I have no regrets.
Bangkok will always be there when I am ready to return. But since I took care of myself, my cold lasted a week instead of a month. I have always said that because of my narcolepsy, it takes me longer to get over simple illnesses, but now I am learning to help myself heal. The simplest part of that healing is to rest, but to rest without feeling guilty about it.
Positive thinking is just the tip of the iceberg when it comes to increasing the quality of life you can enjoy while managing your narcolepsy. Another simple task is to be grateful. Just take a moment, a least once a day or as many times as you like to match some words with what you are grateful for. It helps to be specific, instead of just thinking, “Wow, this is great I am glad I’m here.” Try to create a statement like, “I am so grateful the sun is shining right now. I am thankful for the cool breeze. I appreciate the person who invited me here today.” As we get specific with the things we are grateful for, we realize the list can get quite long. The first few times you try this exercise you may only think of 3 or 4 things that you truly feel appreciative of. But in a matter of weeks or months you will find yourself unable to stop adding to your list!
I won’t pretend to be an expert, so here is where the exercise originates: The Greater Good Science Center