Mast Cell Disorders, Ehlers-Danlos Syndome and Dysautonomia

Navigating the world of chronic disorders with insight, support and information.

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

So Many Life Changes

When I think about the many life changes that have occurred to me in the past few years due to Mast Cell Activation Syndrome (MCAS), Dysautonomia and Ehlers-Danlos Syndrome (EDS), it can be overwhelming. Life as I once knew it, as I used to function, as I had come to enjoy, is no longer. Whether you share one or all of the disorders that I have or some other chronic condition, you know doubt have experienced some of the thoughts and feelings I’ll describe.

I have always been the extremely active, athletic type, running 3-6 miles a day for many years. It was my emotional release, my “feel-good”. Even when EDS ended the running, I walked a lot… and fast. Now, the mast cells cause an anaphylactic reaction with exertion and any standing activity drops my blood pressure from the Dysautonomia. I have mourned my once active self, going through all the stages of grief… denial (no!), anger (damn illness!), bargaining, (if I can just get better…), depression (why bother) and finally acceptance (let’s make the best of what I have!).

I have gone through these steps with each area of my life changes. My career ended because I could not longer work. I loved being an RN, loved working in the hospital and caring for patients, so anger hung out with me for a long time. Thankfully, now I receive pleasure from helping others by volunteering as an RN online.

Relationships change too. When you are so sick that you cannot leave your house without pre-medicating and even then, your blood pressure may drop or your throat may close, you just stay home. Friends slowly fade away… at least most of them do. Family members become nervous that you’ll have another anaphylactic episode and land in ICU again. Isolation is real.

And certainly food changes! The foods I loved the most were taken away. I’m Italian and I love to cook. No more cheese, no more tomatoes! No dairy, no gluten, no soy, no chocolate, no alcohol, no spicy food, no cured meat and the list keeps growing. There was some serious bargaining going on here.

It’s kind of like having an infant again, only I’m the infant. In order to travel, even to my doctor’s in Boston (4 hour drive), we have to pack special food, many medications, my blood pressure cuff, nebulizer, lots of water and our list of questions. Vacation is a monumental event, especially since mast cells react to friction and pressure changes. Bumpy car rides and planes can be painful (EDS) and anaphylactic (MCAS). The photo below is a rare vacation to Maine for our anniversary a couple of years ago. I love looking at the photos.

I could keep going about every aspect of my life that has changed, because it has. I said to a close friend, one who has stuck by me, “I’m not the Jan I used to be.” I was very sad. Being a wise woman, she told me that I will always be the same Jan, with the same spirit and heart. I just have a different functioning level. That is the truth and something we can remember on tough days.

So, here is what I want to share with all of you. I will be 60 in April. There were many times in 2013 when I was lying in ICU and then when I lost my kidney, that I did not believe I’d make it to 60. But I have! well almost. Most of the time, I am at the acceptance part. But when I’m not, when I have those dark days (and we all do), I have learned to reach out to my buddies. I know who will understand, who will get it and just listen. Don’t isolate.

Next, do all the little things that bring you pleasure. Everything and anything that is within your ability. If you are saving your beautiful crystal for company, NO. Use them now, for you. Sit on your deck when weather permits and enjoy the birds (my treasured time). Listen to your favorite music. Call someone you care about. Cook some new recipes from foods you can eat. I have developed a great cookbook now. No matter how miserable the day is, and it will be, take a moment to be grateful for something. On my worst day, when the pain is crazy, I am grateful that I can see to color to distract me.

And lastly, my secret weapon for living in peace with these life changes is meditation. I will be writing a separate blog post about meditation, but it keeps me mindful and keeps me in this present moment. I do not want to be in the future… terrifying thought.

Like Forrest Gump said, “Life is like a box of chocolate. You never know what you’re going to get.” We never know what we are going to get either. Grieve… it’s okay. And remember that you can bounce back and forth between the different stages. Our lives change… we do not. Sending you all gentle hugs.Maine vacation

 

 

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

Deep Breathing

When you are dealing with chronic diseases, pain and all of the stress and anxiety that go along with them, having some way to relax and calm down when panic strikes is invaluable. The quickest to access, easiest to do and most effective is deep breathing. There are many different techniques but I will guide you through my favorites.

Deep Breathing circulates oxygen to your brain and throughout the cells of your body, increasing their functioning capacity, lowering heart rate and blood pressure and calming and quieting your stressed nervous system. To be effective, practice daily, not just in times of stress. I always remind people that you cannot breathe deeply and be anxious at the same time. It switches you from “fight or flight” to “rest or digest”.

Deep abdominal breathing

  1.  Sit or lie in a comfortable position with your back straight.
  2.  Place one hand on your abdomen.
  3.  Inhale deeply through your nose, expanding your ribcage, making your belly expand outward and raising your hand.
  4.  Exhale through your mouth, using your abdominal muscles to push your belly button towards your spine, emptying all the air from your lungs.
  5.  Repeat 3-5 times slowly.
  6.  Practice daily.

Hawaiian Huna Ha Breathing

  1.  Find a quiet place to sit down and concentrate on the feeling of the seat beneath you and your feet on the floor.
  2.  Take a deep breath in through your nose, expanding your belly.
  3.  Let it out through your mouth with the loudly whispered sound of “ha”.
  4.  The out breath should be twice as long as the in breath.
  5.  Repeat 3-5 times slowly.
  6.  Practice daily.

The 4-7-8 Breath

Place the tip of your tongue against the ridge of tissue just behind your upper front teeth, and keep it there through the entire exercise. You will be exhaling through your mouth around your tongue.

  • 1.Close your mouth and inhale quietly through your nose to a mental count of four.
  • 2. Hold your breath for a count of seven.
  • 3. Exhale completely through your mouth, making a whoosh sound to a count of eight.
  • This is one breath. Repeat the cycle three more times for a total of four breaths.

The tip of your tongue stays in position the whole time. The exact time you spend on each phase is not important; the ratio of 4:7:8 is important.

This exercise is like a natural tranquilizer. Do it at least twice a day. You cannot do it too frequently. Do not do more than four breaths at one time for the first month of practice. Later you can extend it to eight breaths. Initially, you may feel a little lightheaded when you first breathe this way, but it will pass.

Once you develop this technique by practicing it every day, it will be a very useful tool that you will always have with you. Use it whenever you feel anxiety rising or anything upsetting happens – before you react. It is also helpful with falling asleep.Attractive man breathing outdoor

©-Antonioguillem-Fotolia.com

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