Guest Post by Karen Fitch, Team Captain of Fitch Feet
What’s your new normal?
Do you have one of those quadruple pill sorters like I do? Maybe you have your infusion appointments logged into you smartphone’s calendar? Possibly you are spending the next few hours wrapped up in bed with a heating pad?
Perhaps you are eating a bowl of chocolate peanut butter ice cream because it’s the only 19 minutes of joy in your life today?
Feasibly, you’re playing gin rummy with your kid because it is all you can manage to do as playing catch in the backyard is not on the agenda today? No matter what is on your “To-Do” list, you are now living a “new normal.”
Let’s not lie to ourselves. You are not the same person you used to be.
Maybe you see yourself as less than or not a complete person anymore? You might be embarrassed by your inability to do what you once did without a second thought. Are you self-conscious about asking for help, thinking your request shows weakness? You might be in a battle for your soul with that ego killer, Shame.
I know folks with chronic diseases that are ashamed of their illnesses. I can tell you this, let that one go. Shame is a reckless force that will steal your precious energy from you. You don’t have time to battle Shame…you have to tell Shame to “step off.”
Join me as you settle in to a new normal.
Learn to accept what you are, where you in the moment. You must live with this disease. You must learn to not be overwhelmed with it. You will search the web, you will ask questions of your medical team. You might even post queries on your support group’s Facebook page.
You have so much to learn and all this new information might take over your frontal lobe. But, take your time; you have the rest of your life to come to terms with your new normal. You might make drastic changes in order to cope or you might be the one who slowly puts one foot in front of the other, measuring out your energies.
Your new normal may adapt over time. Your new normal must include the ability to show yourself compassion.
Your new normal means you might become your own personal expert on Ankylosing Spondylitis.
You will find your favorite online resource or a dynamic AS community. You will learn medical terms that you never thought you’d need to know. You will become your own personal medical encyclopedia.
Even though it can be daunting, I find that documenting symptoms, changes and flares helps me to be a decision maker in my medical care. You will need to find a doctor or team of them that will listen and support you in your health maintenance.
Your new normal means that you will learn that you have the right to ask question of medical professionals and to expect personal and professional care. Your new normal must include your own advocacy in your medical treatment.
Your new normal will include the imperative of being gentle with yourself. This notion is not a skill-set that is frequently taught to many of us in our youth.
When I am being hard on myself, judging myself for not doing enough, for not being enough, I ask myself, “Would you treat your best friend this way?”
The immediate and only answer is, “No.”
That answer frees me to be gentle with myself and to treat myself with care. That answer allows me to show the same compassion towards myself that I am known to show towards others.
Being gentle with oneself also means being a kind realist. You may never feel like your old self, but you will still feel.
Your new normal may mean that you are flexing some emotional muscles that you didn’t even know you had. It takes an immense amount of emotional energy to cope with managing a chronic illness.
This coping can affect your temperament as well as your outlook on your life. Your new normal includes having to manage your emotional life on top of your medical life.
During those dreaded flares, you may find yourself wanting to give up. During moments when you clearly do not have the support of your loved ones, you might feel deep sadness and a sense of what it truly means to be alone. You may discover what depression is and how it can consume your life.
Depression is a weed that can take over the garden of your life…it in invasive and opportunistic. You must identify it in order to fight it and you must constantly be weeding your garden of its nefarious sprouts.
Your new normal may mean that you are in touch with anger. You might feel as if you are a volcano, ready to blow at any minute. The small things that never caught your attention are now bringing forth from you rage.
You might become a master of anger, learning to focus it on the osteophytes that are growing along your spine. Or you might become a writer, journaling your experience. Maybe you will learn to mediate and in doing so, learn to let the anger go. No matter what your new normal is, you have the right to feel the entire spectrum of your emotions.
Your new normal might be dealing with constant stressors. We are told that our stress levels affect our health, but we are not instructed on how to deal with the stress of diagnosis. We are not coached on how to cope with a life lived in pain. We are not taught how to integrate that fact that this new normal does not look like our former existence. When stress presents itself, your new normal may mean that you actually have to write out a plan of what to do…your personal stressed out crisis plan. Mine includes mediation, journaling, napping, making art, binge watching shows on Netflix.
I have a printed list of ways to reduce the stress: read a book or listen to one via audible, text a friend, go for a swim, watch videos on U-tube of cats acting like fools. It is good to have a plan before the crisis.
In the midst of crisis, your ability to make rational decisions leaves you; you are in fight or flight mode. Take care of yourself by taking a moment in the lull times to write up your list. Just writing my list brought me joy. It was nice to remind myself of all the blessings I actually have in this life.
Whatever your new normal looks like, whatever shape it takes, you must honor it.
You must give yourself space to learn and to live.
Your new normal will include your ability to adapt.
Your new normal will include a period of mourning.
You might mourn what your life used to be and will most likely mourn what will never happen.
However, embracing your new normal allows you to manifest what form your life will take. Your new normal can consist of hope and can consist of pain.
Your new normal will allow for you to cope more fully with your life.
Your new normal will allow you permission to be who you must be.
3 thoughts on “What's Your New Normal?”
I had to walk away and have a long hard cry before I pushed the publish button on this one, Karen. What an incredible post to launch our 2017 Walk Your AS Off event with.
This was the most beautiful thing I have ever read and hit so close to home. Thank you so much for taking the time to write this and for being so real. Using the words amazing and incredible seem like such a disservice to something so beautiful. Made me cry.
Thank you so much
Your words resonated so deep within me and were so incredibly personal, I truly felt that we were sitting together talking over a cup of coffee. At my house, however, since I am currently in a flare that has brought me to my knees. No coffee shops are in my immediate future. I think what resonated and at the same time caused tears to start freely flowing, was when you said that in addition to mourning our diagnosis, we must also mourn what will never happen. For me, this is having a second child. I am deep in mourning, but also in deep denial. Of course I can have another baby! There are days I can’t get out of bed and am crushed by the simple act of living, but sure, I can have another child! No problemo! I am incredibly blessed to have an amazing 4 year old son. He is my light on the darkest of days. Thank you for sharing your story and being another ASer that gets it; that I can think of when times get tough. Thank you for being part of our community.