Meditation and Symptoms

If I had to pick just one thing that has helped the symptoms from all three of my disorders the most, I’d choose meditation. I can see some rolling their eyes, getting ready to click away or getting uncomfortable about this suggestion. But… let me assure you that I was just as skeptical when it was first introduced to me.

About 35 years ago, my husband at the time left me for another woman when my daughter was 6 months old. I thought I would crack up. I sought out the help of a local counselor who first help peel me off the ceiling and in later sessions, began teaching me biofeedback. Meditation was one of the first things I learned. I was in so much emotional pain that I would have stood on my head if he said it would help. As my very wise daughter always says, “We move at the speed of our pain.”

Meditation manages my Ehlers-Danlos pain fairly well most days because I cannot take any pain meds except Tylenol, yet my joints dislocate daily. It helps me handle many of the mast cell reaction symptoms. When my heart speeds up when I stand due to the Dysautonomia, I can slow it right down with meditation. But most importantly, on days when I have symptoms of all three disorders slamming me full-force, meditation allows me to feel calm even with all that chaos. I rarely get riled up and my husband will attest to my calmness through the most crazy events. I mostly feel an inner peace that is tranquil and beautiful.

Even if you have tried meditation in the past unsuccessfully, I encourage you to try again. One of the biggest problems new meditators come up against is trying to meditate for too long. I’m going to share my thoughts for adding meditation as your symptoms relief:

  1. Start with 1 minute a day. When you have comfortably managed one minute, add another minute. Don’t rush it; this is not a race. When you get to 5 minutes a day, rejoice! There is no magic time. I like to meditate for at least 15 minutes, but after all these years, I can get so into it that 40 minutes may go by. Remember, I have been doing it for years.
  2. There is no one type that is better than another. I have practiced many different kinds over the years. I presently practice mindful meditation, simply sitting in silence and focus on your breath and being aware of thoughts coming and going. Many prefer guided meditations in the beginning. I always recommend BellaRuth Naparstek. She is amazing! You can trial different types of meditation until you find one that feels right for you.
  3. This is a picture from Mindful magazine that clearly explains posture. The most important thing is to be comfortable, but not lie down and fall asleep. how to sit/Mindful Magazine
  4. Initially, it is helpful if you can make a space to meditate. It can be a simple as one pillow on the floor, or a chair in the corner of a room. Having a designated place at first helps your mind to switch into meditation mode as soon as you sit there. Here’s a pic of my meditation corner in my home office.meditation corner
  5. The most important advice is to make it a habit. Just like you brush your teeth every day, fit meditation into your schedule in a place that’s doable. The way adding a new habit works best is to tack it on to an existing one. For instance, if you have time in the morning and shower in the morning too, meditate right after your shower… or right before.

I will share other types of meditations in future posts. Until then, 1 minute is all you need to start. Oh, and the one thing I want to assure you, the goal is NOT to have an empty mind. It’s to quiet down enough to observe. Peace and calm to you…Jan meditating

You Can Be Happy

Dealing with a chronic illness or even more than one is tough stuff to be sure. At times you can get frustrated, tired, angry and feel defeated. But yes, you can be happy too. It is so easy to get caught up in the symptoms that make you feel miserable, the medications that you must take to function and all of the changes in your life due to the illness.

Some of us have lost friends, lost jobs, had to move, deal with family members who don’t understand, try to find doctors that know how to treat the disorders, buy special food, wear different clothes, change cleaning products, deal with daily pain… well, you get it; the list is long.

But despite what sounds like a terrible existence, we can experience joy, love, fun and of course, be happy. How do you find this when you are feeling such pain? By shifting your thoughts. We tend to focus on the sickness. After all, we feel sick! But, what if you begin to focus on other things…

  • Mindfulness: you have all heard it, over and over. But do you practice it in your every day life? It is simply being aware from moment to moment and noticing exactly what is happening around you and within you. Right now, I’m writing this, but I also hear the water fountain in my husband’s office, so relaxing. I’m also aware that my back hurts, so I get up and stretch for a couple of minutes. I am staying in this present moment. No ruminating over past events or worrying about possible future events. You know how that is? Will I need to Epi and call 911 again? Will the ER know what to do? Have a plan but don’t waste energy. The present is just that… our present to ourself.
  • Gratitude: whether you write in a gratitude journal, use an app on your phone or share around the dinner table each night, expressing gratitude will shift your thoughts from fear and negativity to joy and positivity. If you’re not a believer, just try it for 2 weeks. Faithfully write down 3 things every day that you can be grateful for. Some days, it may be, I woke up today; I have eyes that can read my friends’ posts; I can hear this beautiful music. Others don’t have them. Some days will be better. I have books and books of written gratitude. I enjoy going back and re-reading them.
  • Music: whatever kind of music that makes your heart soar, your feet tap and your body relax is perfect. Some like jazz, some like country, others prefer rock, some like classical or maybe hip hop. I’ve been known to turn up the volume and dance when no one is around except my pup, Buddy. Good for the soul.
  • Plan a vacation: many of us do not get to go on vacations. Travel is difficult. But research from the Netherlands shows that the act of just planning a trip causes more happiness than actually taking the trip. So choose a fun and exciting destination and plan away!
  • Kindness: this is an interesting one but try it. According to Martin Seligman, the author of The Pursuit of Happiness, acts of kindness with no expectation of a reward, bring happiness. Even when we are struggling with chronic disorders, there are times we can fit in moments of kindness for another. You will feel that endorphin high. Nice!
  • Smile: even when you feel like you have nothing to smile about, smile. Your brain will perceive the smile as happiness and it can literally change your mood. My nickname at my last job was “smiley”.   🙂

I would LOVE to have you share your happy moments with me. And here’s a photo of “smiley” with Buddy.smiley

So Much Pain

Pain is a part of life. No one gets through it without the experience. But if you have Ehlers-Danlos Syndrome (EDS) or a Mast Cell Disorder, pain can be your constant companion.

“Regular” people just take an over the counter (OTC) pain medication or prescription pain medication when they experience acute (sudden) pain. But the pain from EDS is chronic and can be with Mast Cell Disorder. So although some medication may be an alternative, many mast cell patients (I’m one) are unable to take any pain medications. Even OTC Ibuprofen is a trigger for a reaction and for some causes anaphylaxis.

Through the years of constant dislocations, surgeries and significant pain, I have gathered every strategy I could to manage. Here are the ones most effective for me:

TENS unit– transcutaneous electrical nerve stimulation. Many insurance companies cover them with a physician script but they are not expensive. But mast cell patients, note that vibration can cause a reaction, so start slow and low.

Stay away from sugar as much as possible. According to Harvard Medical School, highly refined carbohydrates (sugar, white bread, rice and pasta, soda, etc.) increases the levels of cytokines which are inflammatory messengers.

Relaxation– I use any technique that works, but have tried most. Tension increases pain. My most effective is meditation. It does not need to be a long time, start with 5 minutes. Guided imagery is also very effective. Bella Ruth Naparstek is my favorite.

Breathing techniques– these are so important that I will do an entire post on them. They can change you from “flight or fight” mode to “rest and relax”.

CBT- Cognitive Behavioral Therapy– this type of talk therapy focuses on identifying those negative thoughts and behaviors we have and teaching us the skills to change.

Chiropractors– EDS patients have to be very careful that you choose one that understand the dynamics of EDS. Regular manipulation is not recommended. But the right chiropractor doing the right technique can be excellent pain relief.

Sleep– I will admit this is the one thing that still alludes me but these are the props or suggestions that have helped many: body pillows, pillows under the knees and behind the back, contour neck pillows, ear plugs, sleep mask, ambient noise and sleep routine before bed (15-30 minutes). Poor sleep increases pain levels.

Exercise– This can be such a challenge. With Dysautonomia, just standing for more than a few minutes can cause a blood pressure drop and feeling of lightheadedness. Any exercise, even lying down or seated, is beneficial. I’m getting a recumbent bike and will be very slowly work up the time and resistance. Mast cells can cause exercise induced anaphylaxis or “just” a reaction, so the key is to start slow and easy. Two minutes a day. Then three and so on. For EDS, I have two great resources. The first is a webinar I listened to sponsored by EDNF called Intelligent Exercise. The other is a book written by a physical therapist specifically for EDS patients.


Distraction– This is one of my favorite techniques to manage pain. Your brain can only focus it’s attention on so many areas at one time. Those pain signals sent to your brain compete with everything else going on around you. So make those distractions fun and enjoyable. Two that many use is music and movies. One of my favorites is playing with my grandson, Riley. I forget all about my pain.

Playing with Riley