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.