Priorities for Healing

I have not posted in quite a while. The past few months have been challenging, but before I share some of the craziness, this is how I chose to focus on my priorities for healing. It is so easy to let your own health take a backseat when there is chaos around you… especially if you are a natural caretaker like me.

A close family member had an anaphylactic episode for the first time. She has the same diagnoses as me, but our trauma center was not familiar with it and did not believe her. She ended up in ICU and I had to be there every day to manage her care with the assistance of our mast cell specialist.

Then, I had an episode of anaphylaxis… that scary throat closing kind. My typical had been more cardiac with low blood pressure and low heart rate previously.

Next came several weeks of crazy low heart rates in the 30’s and 40’s, causing me to be short of breath, lightheaded and unable to stand for more than a few minutes.

Then my husband, Brian, had a freak accident. He fell on some unmarked liquid on the floor of a hospital he was visiting for work. He fractured his lower leg in two places, requiring a long leg cast, no weight bearing and minimal activity to prevent surgery.

Lastly, I celebrated my 60th birthday. I had told Brian two years earlier, as I lay in ICU after an anaphylactic episode, that if I was still alive at 60, I wanted a birthday party. This is significant because I had had so many back to back anaphylactic episodes that my physicians were unable to control, that I was not sure I’d still be here. Plus, I am an introvert and dislike parties. I had never had a birthday party. Brian’s leg mishap occurred right before my party, so my kids and I had to do all of the work. My kids each live 30 minutes and 40 minutes away, so I tried to take the bulk of the responsibility.

Here is what I have learned…
1. I cannot care for everyone else and leave myself to last. Hard lesson for me, the forever nurse.
2. I focused on the things that support my health, both physical and emotional. I cooked food to nourish me, meditated more each day, journaled my feelings and gratitude and let go of non-essentials (like my blog and cleaning).
3. I did more of the things that bring me joy. I fed and watched my birds, pet my loving pet, Buddy, colored in my many adult coloring books and spent time with my kids. They are not really kids at 29 and 35 but they will always be my kids.
4. No guilt allowed, over anything. I did the best I could do, with a heart rate that was so low, I wondered how it was sending enough blood to all of my organs.
5. Because I have such difficulty sleeping, I did not focus on the number of hours I slept (or did not sleep). I went to bed each night with the intention to let my body rest, to meditate and listen to soft music with my earbuds. No stress.
So… my family member survived the anaphylaxis despite the hospital. I survived my anaphylaxis well too. My heart rate is still way too low and my cardiologist is discussing pacemaker with my other specialists. Brian is doing much better. He is now in a short leg cast after 6 weeks in that uncomfortable long leg one. He still has a long way to go, but he’s more independent now, so I can have a bit more time for me. And my birthday party was wonderful! I saw family members that I had not seen in almost a year and couple of close friends who are near and dear to me.

Life is good. Remember to make YOU a priority for healing.IMG_4127


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

Loneliness and Isolation

If you have any kind of a chronic illness, especially if it affects your functioning, you may have experienced the not so pleasant feelings of loneliness and isolation. And if you have a rare disease like Mast Cell Disorder, Ehlers-Danlos Syndrome or Dysautonomia, it is compounded by much of the medical community not being familiar with it plus often taking years to be diagnosed.

As it that isn’t crazy enough, family and friends sometimes don’t believe your symptoms, think your exaggerating, refuse to learn about it or treat you differently. I have some friends who have disappeared because I can no longer go out and keep up socially.

Sometimes it can cause problems in your relationships when your role totally changes from full-time employed person to one who needs assistance. If you were the caregiver, like me, changing roles to the one that needs the care is so very tough on everyone.

So if you find that you are experiencing loneliness, despite family being present and isolation from “normal” people, I have some thoughts about how to gently ease the pain. Remember this… often people’s reaction to us is out of fear… What will happen to us? Will we get worse? Will there be more financial issues? Will my loved one die? How can I work and take care of them?

  1. That feeling of loneliness is just that… a feeling. Being lonely triggers that scary feeling of abandonment that many of us have experienced. As little kids, we fear our parents would leave us, boyfriends/girlfriends did leave us, friends in school shunned us for new friends, etc. Remind yourself it is YOUR feeling, not a fact. You can be alone and not lonely.
  2. We often isolate. Out of fear, from lack of energy, frustration from others response to us, feeling not worthy of others friendship. Reach out. First start in a safe place like a support group for your disorder. Online can be less threatening. Then, as you make online friends, see if there is a local support group to meet with the friends in person. If not, check to see if any live in your area. That’s what I did and met the most amazing woman. She came to my house and we had a wonderful visit.
  3. Even though we can feel so stinking sick sometimes, focus on positive, upbeat things in your life. Look hard. We all have them. Your kids are beautiful. You spouse is hard working. Your apartment is cozy. Your dog is loving and affectionate. It doesn’t matter how miserable your situation seems at the time, you do have good things happening. I write in a gratitude journal every day. Some days, I can only write, “I woke up today.” When you shift to an attitude of gratitude, you are more fun to be around.
  4. Pay attention to your self-talk. Critical messages like, “No one will want to spend time with me.” is self-fulfilling. Or, “I’m in such pain, I’m not good company.” Give this a try, “I’m going to call my friend and we will talk and laugh.”
  5. When you are struggling with a chronic illness, you want to be able to talk about it. Share freely with others who are struggling too. Of course you need to let your family know what’s going on, but don’t turn into the “chronic illness personality”. All nurses are familiar with this. Being sick can transform you into a cranky, complaining, unpleasant person. When I worked in the hospital, nurses would know quickly who the chronic patients were. I vowed never to turn into one, no matter how bad my disorders progressed. Talk about something other than your illness. Be a bright spot, not a dark cloud. Be someone others enjoy being around.
  6. Steer clear of the toxic people. If they are family, decrease the amount of time spent with them. If they are friends, boot them out. Nurture any and all loving, caring and compassionate people, both in person and online. Support is what we are looking for, not someone telling us what we really need to do is heal ourselves and stop this nonsense.
  7. Being alone and in solitude is not being lonely and isolating. The difference is how you feel. I treasure my alone time and solitude. But those times I have isolated and felt lonely, there was always something else going on. Usually some fear that needed addressing.
  8. Keep yourself busy, even if it’s in your home. I started coloring with colored pencils in adult coloring books and LOVE it. I also adore all of my plants and care for them with love. Even if you are bed-bound, there are so many things you can do. I know some masto friends who do amazing knitting and crafts.
  9. One of the most effective ways to channel feelings and emotions is through journaling. It can sound so daunting, especially when you don’t feel well. I tell everyone not to be a perfectionist. Write one word. I have been journal writing for years. Sometimes my one word is an expletive. That’s the kind of day it is. You don’t have to write paragraphs, or even sentences. Write a couple of words. Releasing thoughts onto paper is very therapeutic.
  10. Take supreme care of yourself. Eat the best food you can, learn stress relieving techniques, drink plenty of purified water, exercise (even baby steps) and manage your disease the best you can. Some day, you will feel well enough to venture out to be with your friends. Until then, do what I do, have them over to your house. Oh… and those friends that don’t bother with you any more because you’re sick and can’t socialize… they weren’t really friends anyway.

Reach out. Find someone to share joy and happiness, not misery. Sending love and hugs.journaling