I’m a pretty tough customer in physical therapy. But, the other day my physical therapist said something very poignant that gave me pause. I’d like to share it with you.
He said, because I’ve had chronic illness for so long, I’ve adopted so many coping strategies to help me through. So many techniques and methods I call my own to get me from one day to the next. (And here he is teaching this old dog new tricks.) However, he was right when he asked me, “Is all of this still working for you?”
You start collecting techniques from the very first moment you hear the word, “permanent” or “chronic.” Our doctors don’t help as quickly as our own shifts and wriggles take effect. Soon enough, you’ve built a pattern for yourself that is keeping you going. Over so many years, and multiple conditions, you better believe I have some modalities and some definite patterns! Are they still working for me?
Could they be holding me back?
Adaptation is paramount with chronic illness. You have to be able to rebuild in order to find purpose again, to find yourself again amid your ever-changing body. But as your body changes, does the structure that you built change with it?
For instance, if all you were once able to do is use the computer or your smart phone, maybe you grew a strong online network which gave you purpose. You could have done nothing instead, but you were brave and reached out to others online. It was incredible how much your work online distracted from your illness and impacted your life and the lives of others! It may have even saved your life. But as your body changes, you realize you can do more tactile work like crafting. Is spending as much time on the computer still working for you? Or, could it even be holding you back from moving more?
I have to go over so many of the coping tools I use- all of the amazing methods which have helped me to this point and ask this question. It’s spring after all; time for a spring cleaning of sorts. Is it STILL working? It may have saved my life last year, but will it take me to my next goal this year?
It washes over you like the song that makes your heart pound. Like the goose bumps your body forgets to have any more. It’s like a constant shiver, and then sometimes, all at once- like being startled. Then, it shatters so loudly into a million pieces all over you and you think your insides might have been shredded along with it.
If you have grieved a sudden loss, you know this feeling.
If you have lived through multiple crises, traumas, or losses, you know this feeling all too well. And if this is a very familiar feeling to you, I am sorry for all of the pain and shock you have endured throughout your life.
Good news: my body has had its first good days in 4 years! The past year, I could feel improvement, however every inch of progress has come with a setback in another area of my health. So, it has been a slow year of trade offs and feeling as though my head, body and brain have been fighting against one another. Since I couldn’t make physical progress, I took advantage of the slow return to clarity of my mind. I have been focusing on improving my brain functioning, my speech, fine motor skills, trying to regain memory, and making strong connections with others again online. In four years time, that seems like minor recovery, but when you can’t wait around for your body, you do whatever you can with the tools you do have. I know everyone reading with a disability, in recovery after stroke or an accident, or with a chronic illness understands that sentiment.
I’m not new to chronic illness as I’ve had severe chronic pain for 10 years, however dealing with multiple chronic illnesses in such a debilitating way started in 2011. Actually, last week was the 4 year anniversary of the procedures that caused all of the major issues that have so changed my body, mind, and the lives of my husband and our families. No matter what, I feel as though a part of me will always be left back in May, 2011. And a huge piece of my subconscious is still 22 when the problems first began. I think losing health stops time in a way- or changes the way time moves and how we move through it.
I thought I was done grieving for my loss of health, but after becoming bed bound at 28, the grief process started all over again. Every time something else is lost to my body, I have to mourn first before I can accept it. Several years into my journey with chronic pain, I decided to celebrate the “Spooniversary” that began in 2004. It was no longer a melancholy day of loss; instead I decided to celebrate the endurance, support, and faith it took to traverse it. Ten years was a milestone. But all of my newer illness acquisitions are a different ballgame. Maybe next May I will be ready to also celebrate how much this body and mind have endured since 2011. For now, I think I’m just now beginning to come to terms with much of what has taken place over the past 4 years.
Last week was also the anniversary of the passing of my best friend. Every year at this time, I reflect on all of the ways she changed my life, all of the soulful years we spent learning and growing together. The way we became each other’s family at a time when we both were desperate for a safe space to call home. We became each other’s peaceful place in the world. The time has finally come, so many years later that I can look back on her life and our years spent together and feel more joy than sorrow. Her life continues to affect mine. Her spirit echoes into me every day. I think of her words, her soul, her love, and I cannot help but feel love still flowing like a river from her memory. Because of her, I know that a person can have more than one soul mate- and those rare relationships can save you from life’s ugliness in the most beautiful way. These unique connections can ground us to the world so we don’t float away when the earth seems to have lost its gravity. I remember her every day as she is part of me, and always will be. But as you know, there are those days, those celebrations, those dates marked on your personal calendar which tug at your heart just a bit more. The week of Mother’s Day is always that for me.
And the same week, without warning, like a loud crashing vessel falling from the sky and onto our roof. Gravity was lost on the earth again. Another confusing life circumstance. So many unanswered questions. Shattered pieces all around- you don’t know where to begin the pickup. For now, I don’t even have the words to express what I am feeling or what just happened in our family. This new current issue is certainly unexpected. I think May is definitely NOT my month!
I will look forward to a time when my needs aren’t in the hands of others, and I can be the one helping once again. I am always very thankful to have those in my life willing to do the things I no longer can for myself. Having better health days lately makes me feel like that time might be closer within my reach.
When I look back on this past year, and how my body has been swapping one good thing for another big setback, the past couple weeks feel very similar to that. My body is giving me a green light to move forward in recovery, while life is ripping the rug out in another way. If I were not grieving, I would be so excited about progress. It does help soften the blow, so I’m very grateful to have the added strength at this time especially. That is life, isn’t it? The universe is always balancing itself.
Since May is Mental Health Awareness Month, bloggers and those on social networking have been doing awesome work sharing and advocating about equal care, I wanted to add something as well. People who are bed bound or home bound do not have the same access to mental health care. Whether you have expensive private insurance or Medicare/Medicaid, it is nearly impossible in most areas to find a “Home Mental Health Professional”. Most psychologists and counselors are not covered or willing to do home visits, nor are they trained in distance therapy (online counseling). There is an abundance of web therapy now, however much of it is not covered under insurance and does not always adhere to guidelines for keeping records and evaluating. For those who are incapacitated from chronic, progressive or mental illness, there are a myriad of psychological implications and we do not have the same treatment options as those who can drive to an office, sit in a waiting room, and then sit and talk aloud with a counselor in person. We know we are losing desperate brothers and sisters who have severe chronic pain, chronic illness and mental illness conditions. In the near future, home therapy options NEED to become more easily available and covered by providers.
Take the Stigma Free Pledge for Mental Health Awareness Month 2015
My toothbrush is relatively small and lightweight. My father would say, it’s “smaller than a breadbox.” It is inexpensive and is of no real value, but my toothbrush is a measuring stick for my ability recently. Independent tooth brushing is a high goal I set long ago, and I have finally reached it!
Just one year ago I was unable to brush my teeth without assistance. Whoever was caring for me (usually my husband) would help me to brush my teeth from a horizontal position in bed. This is how I have done just about everything for the past 3 years. With help, lying down. This past year, however, I have been working hard toward more independence and “going vertical.”
I have a condition called Postural Orthostatic Tachycardia Syndrome (Whew! That’s a mouthful!). P.O.T.S. causes my heart to race like crazy whenever I stand or sit and then my blood pressure drops so quickly and sharply that I pass out or nearly pass out. It’s like you are running a marathon for a moment and then you suddenly get very familiar with the floor. It’s quite a riot, let me tell you. It comes along with other problems like vertigo, chest pains, fatigue, head pain, labored breathing, dehydration, and sometimes I feel like I’m having a full-on panic attack all day. But the most disabling part is the passing out disorder (obviously, being unconscious is pretty disabling).
So, my fight with gravity began by quite literally crawling slowly with lots of rest stops- and only to the restroom. Then, for a couple of years, I was walking slowly to the restroom, held up by a caregiver, bent over with my body in an upside down “L” position so my head was down, keeping my blood pressure up. Now, on my good days, I am working on being fully upright, without help, for (drumroll) about ONE MINUTE altogether. It’s very exciting!
Brushing my teeth means trying to get out of bed, walk about 10 feet to the bathroom, and balancing to brush my teeth without passing out or falling down (P.S., I’m a tumbling expert).
Even though I’m not able to stand or walk vertical throughout, this is HUGE progress in my recovery. A minute upright gained in three years sounds very small, but for someone with an Autonomic Nervous System disorder (Dysautonomia) like POTS, it’s such a big step. Getting to the restroom on my own, and now doing my own dental hygiene on MY terms feels amazing! And guess who has given a stand-up hug? That’s right! THIS GIRL.
I have other neurological chronic pain and chronic illnesses, which many of those with this disorder do. But I am not alone, as so many young women and teen girls have POTS as well. Just know that people with POTS can range on a broad spectrum. There are those who have some mild heart and blood pressure symptoms once in a while, but are functioning normally otherwise, then there are those like myself who are in/out of hospitals for care and are bed-bound for years from the disorder (though hopefully not for much longer…). I’m coming for you POTS!
If you liked any of my images today, they are all original and you may share them, along with my POTS Awareness Plaque.
Great article on Dysautonomia from Elle and the Auto Gnome